Reeve Foundation Paralysis Community

Hi Viola,

I am very new at this forum; in fact this is my second posting. However, I am so glad to be here and be able to correspond with others having the same issues.

 

I too, had to make this decision, in my case it was business related but, the bottom line is that..I felt guilty.. and scared for my husband's well being,  After all.. a care giver's role is to provide safety to our loved one. 

 

My husband persuaded me to go for it. It was an act of bravery from both of us...and so we did!!It all was good and much good came from it. 

 

Hope, I was able to help you. God knows, you already have very good advice from many wise people.

 

Thank you Dr. Dan and Trish for the many postings, I love reading them, they have given me much comfort in my search for hope.

 

Regards, Ivonne

  

        

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"Life is a box of chocolates"

Hi Ivonne,

I am glad you have joined us and have begun posting. I know we can all learn a great deal from each other and support each other along this journey.

I look forward to your continued comments and thanks for sharing your experience.

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Trish

"Life isn't about waiting for the storm to pass...it's learning to dance in the rain."

Having been on both ends of this situation, caregiver to my Mother as she was dying of cancer and now as a SPI myself, my advice to you is to go.

The first time I went out and left my sister with my mother I called home and no one answered I was sure that Mom had died while i was out. I rushed home to find all was fine. My sister just didn't know how to use the call waiting system on my phone. We have plenty of laughs about that now,
but the best thing about that day was how happy my Mother was that I was out living and enjoying my life.

Now that my Husband is my major caregiver
nothing makes me happier then when he is out and about doing the things he did before my SCI.

Please take my advice and go and enjoy yourself. It will be a gift to your Husband and a much needed break for you.

Been there, done it, go and have a great time.

Denise

Dear all,

First,  I want to thank Trish for welcoming me to this forum. I was attracted to your heading " SCI steals and robs from all"... to me.. it says it all...truly,  how eloquently said!

This journey is so very difficult. It steals and robs.. It takes you far and beyond and touches every part of your soul. For me and hubby, it has been 18 months. Oh God, what a journey.

I am so grateful to be able to speak with those who can understand.

We share one common factor, we chose love.

To next time.. I wish you all a good night!   Ivonne  

 

 

 

 

 

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"Life is a box of chocolates"

You've gotten some great advice about going out and finding pleasure. Please do something every day that brings you joy, even if it's just taking a walk or a bath or sharing a laugh with a good friend. These things are not distractions from pain, bringing pleasure into your life is actually part of the healing process.
You see, the longer you go without joy, the harder it is to experience it. On the other hand, if you keep your brain and the practice of experiencing pleasure, then it will be easier to find pleasure in more things.
Same advice for your husband. Actually, same advice for most humans!

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Dan Gottlieb Ph.D.
www.DrDanGottlieb.com
"wisdom of Sam: observations on life from an uncommon child"
trailer:http://www.youtube.com/watch?v=_V4QrekU1Wk

Simply stated, "It is not what you do not have, it is what you do have".  A writer told me that statement 39 years ago when I was recovering as a paraplegic from a car accident.  Those magical words have instilled such self awareness and confidence.   I have had 3 children, (natural child birth), worked in occupations from political campaign manager to my current position as a commercial realtor for a worldwide company.  You can learn a different way at looking @ things in life. 

From the moment I was told those magical words, I have learned about so many attributes that I possess.  I do not think I would have learned so much about my inner self if I was not forced against the wall.  Facing paralysis felt like that.  I had to look inside and concentrate on what I did have in order to enjoy the world.  I could no longer water ski, but I could hold on to a tube in the middle of the lake.  I could no longer model...but I sure did look good in a wheelchair...and still do for my age.  

My advise to you, is to grow your inside....concentrate on the good not the bad.  It will take a lot of strength to do this....but, you can and you will!  You can make your life fullfilling, maybe is not an option.  What are some of your dreams (only fitting within your means)?  Could you be an advocate for a non profit ( only your interest).   Could you  make a difference in the world.  Possibly come up with strategies.

Of course, some of your "list" can apply to all of us.  For instance, I wish I could stand in the shower with my husband.  I wish I could walk on the golf course. I wish I could dance!  Wishing is not reality.  I challenge myself and bring out the good in every situation....I can do a lot of things just in creative ways. I have learned to concentrate on what I can do with what I have. 

It is imperative that you make time for yourself...your wants or your needs.  You are in a very frustrating position.  If you decide to stay with your husband, challenge your mind.  Create a new life.    

 .

 

Most recent book "wisdom of Sam" I advised Sam's parents to raise their child they have rather than to "help" this child become who they think he should be. That's probably good advice for all parents. But I take it a step further.
A couple of years ago I was with a man who has struggled with depression and despair much of his life. He refused to take medication and spent much of his life searching for a philosophy or a spiritual path that would help him find peace. No luck so far.
One day he came to my office and said he was just tired of this life and that is suicide was an option, he would take it. He had two adult children and one of his parents were still living at the time and he didn't want to cause them pain.
I asked him simply about today: "do you want to live or do you want to die today?" I wondered.
He thought for a long time and said "I guess today I want to live." So this opens up a whole new set of questions. If he is going to live today, and if he is going to do it because he wants to live today, then the question as how would he like to live his life this one day knowing that tomorrow he could make a different decision.
Same question for you -- for all of us. If we choose to live the lives we have rather than the ones we deserve or the ones we want or the ones everybody else seems to have, but if we choose to live the lives we have, then what? How do we want to live the lives we have?
Me? I want to be awake as much as possible. I want to be able to spend less time lost inside my mind with irrelevant ideas. I want to be able to feel my life fully as long as I have it, the good and the bad.
I want to be fully awake as much as possible before I take the "big nap"!

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Dan Gottlieb Ph.D.
www.DrDanGottlieb.com
"wisdom of Sam: observations on life from an uncommon child"
trailer:http://www.youtube.com/watch?v=_V4QrekU1Wk

Dr. Dan,
I've been reading your posts for some time now. I think it's wonderful how open & honest you are about your situation. You must give hope to a lot of people. Your positive attitude is inspiring. That said, I think you are a very rare individual. I think it's great that you have such a rosy perspective of life. It's not something many people have, let alone those of us effected by paralysis. I envy people like you and Christopher Reeve, that can somehow transcend all the hardships and stay positive. I know you've said yourself, that it took you along time to be able to think the way you do today. It would be great if I could do that myself, someday. For now, I just do the best I can and I don't hold anyone to my standard. Only you know yourself best. I think your attitude is very unique and I find it hard to expect that many people living with paralysis can/will be able to reach the level of optimism and love of life that you have.

Trish,
I'm not in the caregiver's shoes, but I'm wondering a few things about your husband, since I'm coming from his perspective. Why it is you feel you have hardly any time for yourself? You mentioned nurses, does your husband have aides as well? If not, why (if you don't mind saying)? I have a C5 complete injury; aka no functional movement. I can bend my arms inward, but that doesn't really give me any ability to care for myself. I got myself out of a nursing home & out into my own apartment (about a year & a half after my accident). I don't do disabled communities. My apartment is in a regular apartment complex. It was important to me to be back in a diverse community. Given the fact that I have no functional movement, having special accommodations, like low counter tops, special sinks, light switches, doorknobs, etc., were irrelevant. My main criteria was to find a place with no steps, a decent layout for two people and a moderate sized bathroom. I was able to work around not having a roll-in shower, by buying a special commode & track system, which slides me into a conventional tub, without needing to lift or pivot me (since I have hardly any trunk stability). I get 56hrs a week (8hrs a day) with an aide and get a nurse every other day for bp. The first year living here, a buddy from high school roomed with me. He was my safety net at night. He worked a full time job & came & went with friends. All in all, I was alone in my apt. for about 4hrs each day. I had a ECU (environmental control unit) that I could tap with my head to use the phone, operate the tv & open/close the front door (among a few other things). I seldomly used it, because I had my cell phone (bluetooth ear piece) and laptop, which I operate with a mouthstick. I enjoyed the privacy & solitude of those four hours & the arrangement worked rather well. During that year I only had to call 911 once, for a pinched catheter. I direct all my care. I take care of all my finances/bills online. I'm wondering why your husband isn't a bit more independent. I don't mean that in a bad way, only curiosity and lack of information. Since my roomie moved out, my family stepped up to the plate (a roommate backed out last minute). Now my sister lives with me & my mom helps a lot too. It's give/take. I cover the bulk of the finances& they do all the physical stuff. It's nice having family, because I can ask them to help me with more than I can a friend.On the down side, it makes me feel less dependent. It's got it's pros/cons. I was very independent and much prefer being the helper, not the helpie. Having a buddy room with me felt more like business & I had privacy from my family. It's doable totally on my own, but of course, I feel more safe & secure with family. Although I feel suffocated at times, I don't know that I'd want to have to search for a stranger to be my roomie. I could see myself living happily (as happily as possible, anyway) with a live-in aide, if I could afford one. I'm saying all this, because I wonder if your husband could be a bit less dependent & allow you to get the "me" time you need & deserve. Do you find your fears holding you back from leaving him? It all depends on the reasoning, but I think you might be able to do a little less. He really should qualify for some time with aides & you can use them to your advantage. I am in total control of my care. I can walk through anyone on how to change my catheter, where everything is located, maintaining my apt. I hope your husband can take back some independence. it will certainly help him feel better about himself too.
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I think the only way to keep moving forward is to find a purpose or motivation that outweighs the hardships or at the very least, makes them seem tolerable. My focus and motivation is a cure. I spend my energy trying to educate others about paralysis, in hopes of increasing support towards a cure. I'm always aiming my art and my writing at the "average" person. I don't try to reach out to people with disabilities as much, because I feel as though we're in the same boat and other than for support, I'm not making much of an impact. It's not my goal to be inspirational. It's my goal to be open, honest and upfront about my life and my struggles with paralysis. I have little desire for gadgets or the latest adaptive equipment. I understand it's value, but I'm shooting for the top prize; to be able to live gadget free. I want to see equality for people with disabilities and cheer for those that work hard to make things accessible. My objective is to teach the average person what it's like to live with paralysis and why it needs to be cured, now. I feel that sugarcoating things or talking about all the things "I can do, only in a different way" isn't what makes people rally for a cure. I don't want people to ever think "Paralysis isn't that bad. She can do anything if she tries." Reality is, that's not true. I want people to understand all the challenges and hardships that we have to go through, just to be able to "do things just like everyone else." I want people to understand the raw, day in and day out reality. I'm not trying to be negative. I just want people to know the entire picture; that when they see me at a gallery, or in the mall with friends, that they understand that I had to be up hours before my friends, for bowel program and to get showered and dressed. I want people to know all the behind the scenes (so to speak) stuff that they wouldn't normally know, because they're often hidden out of embarrassment. Yes, it's super embarrassing being in your twenties and having to wear Depends because your bowel program didn't go so well. Yes, it's horribly frustrating and depressing to have no sexual outlet; to go for years without feeling the touch of someone else. It's the really hard stuff that touches people and makes them want to help.

I consider myself a realist. I believe positive thinking is good, as is hope, but I'm always considering the realities of the present moment. Some of my friends will tell you how well I deal with my situation & how strong I am, but that's not really true. I don't feel any stronger, or more courageous than anyone else. In fact my able bodied friends think it's so brave to keep moving forward, in spite of paralysis, because they have no clue what it's like. So many people (including myself, before my injury) say things like, "If I were paralyzed in an accident I'd just give up. I wouldn't be able to live like that." It sounds so easy to say you'd just give up, when in reality, things change when you are actually on the brink of death. If an injury or major illness does effect a person, they're first instinct is almost always going to be to fight to live. In the beginning, there's also a tremendous amount of hope in recovery and often denial in reality. It's not as easy to just "give up" as people would make it seem. It's very easy to say you'd give up, when you've never faced death.

There's so many aspects of paralysis that can't be adequately described or explained; they have to be experienced to understand. You can try to explain things based on things you've experienced on your feet, but it's entirely unique. I think it's all the little things that the average person has no clue about, that make paralysis so difficult. Although caregivers (such as spouces or parents) can suffer almost as much as the person that's paralyzed, they should remember that everything you (as the caregiver) feel deprived of, or stressed out about, the person your caring for wants those things for themselves and you for you, just as much as you do. It's worst for the paralyzed person though, because we never get a break, have no outlets to fall back on (sex and bowel/bladder function are all perfect examples) and have all the guilt over watching our caregivers suffer alongside us. People on the outside are so focused on your inability to walk that they fail to see other (what should be obvious) equally important aspects of life: physical affection, sex, toileting, bathing, eating, grooming, breathing. I'm baffled by the amount of people that haven't considered those basic needs, let alone really tiny nuances like, scratching an itch or having an eyelash caught in your eye. The truth of the matter is that ninety percent of our ADLs (activities for daily living) are things we all take/took for granted as being mundane, unconscious, consistent behaviors, that we rarely ever take a second to be thankful for being able to do them or consider what it would be like, if we couldn't do them. It's hard for someone looking it to understand the whole picture of paralysis. People can be empathetic, but most don't know enough to really know what you go through on a daily basis. Paralysis is not even something you can really simulate. I often wish there were a way to let people experience paralysis for a day or two. I'm sure there would be an overwhelming outcry for a cure. Two days would be more than enough. You could restrain someone's limbs, but they'd still have feeling and sensation. It's the complete vulnerability, the lack of privacy or modesty, having to endure bowel programs and catheters and the loneliness and isolation that comes with not being able to feel touch that are the worst aspects of paralysis and yet the hardest to simulate. Not to mention, the sorrow and loss that people go through and the fear an anxiety of not knowing if you'll ever be well again.

I can say with certainty that if I knew what I know now and had prepared a living will before my accident, that I would not be here typing this to you today. The living will questions focus on quality of life and what you consider to be reasonable or not, in terms of worth. Every individual has their own limitations, strengths and coping skills. What might seem reasonable or worthwhile to me, might be unbearable for someone else. Unfortunately (or fortunately in my case, some might argue) the average person in their twenties does not see major illness or death as something they need to worry about, or take seriously. This is not a life I would willingly choose for myself. If I had taken the time to consider what parameters I felt were quality and which were not, the life I have now, would have surely be below my standards. However, I did not have a living will when I got hurt. Choices were made for me, to save my life at the time of my injury. I fought to get better. I did not fight for the life I have. I was fighting for the life I had. If I had truly believed that I wasn't going to get better and that five years later I'd be sitting here, I would not have had the drive to live. I had no clue what I was really in for, when I was first injured. I hadn't ever broken a bone or spent a night in a hospital. I know what I can handle now, because of all the things I've experienced. I had to experience certain things, to get to the point I'm at now. I now know that I never want to be on a ventilator again or have a tracheotomy. Other people might live happily, despite being dependent on machines, but that is where I draw the line. Personally, I do not view this life as being a quality life, but it is the life I have, so I make due. Once you've pulled through the initial injury and come out the other side, you're kind of stuck with what you have. Giving up becomes hard, because you know what it feels like to almost die, and in order to give up, you risk making your already awful situation even worst. In the end, moving forward the best you can, is the logical choice.

I don't think it's right to pass judgment on what someone chooses to do with their life. No one knows what it's like to live in your shoes, so how can you presume to know what it's like for someone else? I've read about cases (one from England in particular) where people have chosen suicide over suffering. There is a controversial clinic in Switzerland, called Dignitas that performs medically assisted suicides. Not to many years ago there was a British rugby athlete that chose to go there, after being paralyzed for over a year and his parents were later persecuted for respecting his wishes. Of course, there's also Dr. Kevorkian, who made euthanasia a hot topic here in the states.Granted, there are countless situations where people commit suicide, that could have been helped with therapy, support and/or medication. However, if we only consider people with chronic illness or progressive, incurable, diseases, (and do not base our opinion on religious beliefs) why should it be ok for someone else to force these individuals to suffer? I think it's wrong and downright cruel for one person to judge another person for taking his/her life, when there is no other available option, besides just suffering with it. If you can offer up a cure or solution to the root problem, in my case paralysis, then I would willing take it. If you can not offer me a cure or solution, I don't think you have the right to force me to suffer. It's very selfish to want someone to keep pushing forward, when they don't have the desire to live within themselves. The people doing the pushing, or laying judgment need to analyze themselves and consider if the reasons are in the best interest of themselves or the person they're encouraging. If you've never been paralyzed, I don't feel you have a right to complain. Why would you want your loved one to suffer? Don't get me wrong, I'm not all gung-ho euthanasia. All I'm saying is that people know their own limitations and when faced with a future of prolonged suffering (and no tangible treatments or cures), it is sometimes reasonable and should be respected, not condemned. After all, we give this basic courtesy to our pets, why should we be human to animals, but not to humans?

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www.christinasymanski.com

Dear Christina,

First let me say welcome to the community and thank you for sharing your insights and experiences. I think it is always wonderful to hear how others manage through this lifestyle.

The funny thing is I could have written some of the very same words you have written except I feel they apply to my plight as well. I think that is what this whole 5 page post is all about. I too want people to understand the raw day to day reality I am living; I’m not being negative either, I just want them to see the entire picture. So what is the entire picture for me? It’s hard to explain in a post on the forum. But I miss spontaneity, touch, and sex too. Sure I can feel touch, but I’ve had no one to touch me in 8 years. Sure I am physically able to have and enjoy sex, but I have a partner that can’t do either so therefore that‘s my reality. Yes I miss it too. These things spousal caregivers willingly give up. We do have a choice, but my husband’s injury has dictated my decisions. Yes people can be empathetic, but they can never know what I go through either. I had no clue what I was in for either. I had to learn to change a trach, suction, do a bowel program on my husband, change and manage a suprapubic cath, transfer and transport a quad, shower a quad, dress a quad, do ROM. I never dreamed I would be feeding by husband every meal, brushing his teeth, shaving him, washing and drying his hair, clipping his nails and nose hairs. No I certainly did not know what I was in for physically, mentally or financially.

My husband has a C3-C4 injury accompanied with a TBI. He has a trach, a paralyzed vocal cord and can only move his neck. Certainly his trach and TBI complicate his care and really make it nearly impossible for him to be unattended for any length of time. Frankly it is not safe and could be life threatening for him should he get a mucus plug that obstructs his airway.

The feeling of having no time is only partly the fault of caregiving. What does it is caregiving, managing a troop of nurses, working a job, raising 2 kids, maintaining a household and doing it all by myself. Most of this stuff takes me 20 hours a day throw in a few hours of sleep every once in a while and viola …..no time for me ever. I think sometimes people forget that I am trying to manage everything that used to take both of us to do. And yes I could probably do that all by myself and remain sane. It’s when you throw on the additional responsibilities of a C3 quad, a group of nurses, insurance companies, etc.…that is what tips the scale.

I do wish my husband could be a little more independent, but I think mostly his brain injury prevents that, and I’ve sort of stopped wishing for something that seems impossible. I know that so many with a SCI correctly say they are the same person post injury just with some physical limitations. Unfortunately we can’t say that. My husband is not the same at all. He will be the first to tell you that. This has certainly set up a relationship where he is very dependant on me to help him manage his life the best we both know how.

I will stand by the original statement I made in this post over a year ago…SCI steals and robs from all.

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Trish

"Life isn't about waiting for the storm to pass...it's learning to dance in the rain."

Trisha,
Thanks for clarifying. I often struggle finding things to be thankful for & recognize that it could be worst. I don't really understand the psychology behind using the "it could be worst" outlook all the time. Most times, it just makes me more depressed to know that other people are suffering. It makes me frustrated to think about anyone having to endure a situation worst than mine. I can't help thinking, "Come on! How much is one person supposed to be able to cope with?!" I struggle a lot with faith (or lack there of) in God & how unfair life is in general. When I'm really down, I try to remind myself of horrible things I've overcome in my own life, versus thinking about worst scenarios. Granted, you can't get much worst than a complete cervical SCI at 24, but when I do hear about someone like your husband I can't help but wanting to cry. Some people get offended when people say they feel sorry for you. I don't understand why pity is so hated. I interpret it as caring, not condescending. I feel sorry for myself. How can people not feel sorry? So I hope you understand what I mean when I say how sad your situation makes me feel & how much I wish I had some great idea or advice for you. I know words are appreciated, but they don't change anything.
When I think about my small list of things I'm grateful for my family & friends are at the top.
One of the most common things people say to cheer me up (I guess) is ,"Thank God you still have your mind." Often times, I debate the amount of luck having my mind is. On one hand, my mind allows me to express myself & stay in charge of my life; clearly a blessing. On the other hand, my mind uses all my memories against me. I'm tormented by all that I've been through, all that I lost & all the dreams that probably will never come true. I hate when people say, "but you're still you. You're still here." A part of "Christina" is here, but I think I'll always feel that a part of me died that day. I don't think anyone is ever truly the same person as before a SCI. I don't see how that could possible, whether for good or bad. I sometimes wish I could somehow keep my intelligence, memories of my childhood & training, and selectively erase the rest. Kind of like in that movie "Eternal Sunrise of a Spotless Mind." Then I think about all the people I'd be essentially cutting out of my life or how our relationships would change. Although, I might happy (ignorance is bliss), I know my loved ones would be hurting even worst then they are now. Obviously, I don't have a choice, but to deal with the whole picture and even if I did, I don't think I could be selfish enough to take the escape. I can honestly say though, that I'm an extremely different person than before & I've learned a lot about myself I never knew.
I can only imagine what life is like for your husband, based on the first couple of months after my injury. I was on & off the vent. I can remember having to communicate using alphabet charts & the terror of feeling trapped in my own body (I still feel that to a lesser degree). I've been at the complete mercy of others. I had lethally high fevers & a lot of hallucinations in ICU and remember feeling like I was crazy. My head was so cloudy, I couldn't think straight and I was really scared how different I might be. I know the pain of feeling like a burden and have tried everything in my power to lessen the load on my loved ones. It killed me to have other people making decisions about my stuff and having to relinquish control in order to get things done. Those first couple of months were by far, the worst in my life. I will never be able to imagine what life would be like to have to still be coping with those things. I can't imagine the loss & frustration that you & your children must feel as well.
I want so badly to have the love & companionship of a spouse, but can't even bring myself to date. The two main reasons being that I still love my ex-boyfriend & the feelings of how much of a burden I see myself as. I can't even consider asking or expecting someone else to take on all the baggage & burdens that my paralysis would bring to the relationship. I'd feel horribly selfish. I'd also question why anyone would choose to deal with this. I understand if the couple is already married, because they've already commited themselves to one another and share a history. I think if my ex were to decide he wanted to get back together, I'm at the point where I'd be open to trying. There again, we already share a past, it's not as hard to open up to him or be willing to be open minded about being intimate, because we've already done that in the past. Naturally, things would be quite different now, but because I already love him, I'd try. I don't see that realistically happening, but even if it did, there's so much of my life that I'd want to shield him from. For his sake and for my own sanity. Bowel program would be a perfect example, of something I'd never want him to be apart of, or involved in. Considering I have aides & nurses, that could be the case for the majority of the time, but what about those rare occasions of incontinence? It's that kind of stuff that I don't know if I can handle. I try really hard not to blur the lines of caregiver, friend or relative. With the exception of my mother, my sister and my best friend, no one has helped be with any type of very intimate, personal care (bathing, dressing, bp) besides my aides or nurses. In fact, no one but my aides or nurses have helped me with bp. I'd like to keep it that way.
Not only would I not want to place the extra burden on a boyfriend or husband, but it's my own desire for privacy and embarrassment factor. I've always had bathroom issues (using public restrooms) so being paralyzed has only magnified my insecurities ten fold! Not be graphic or raunchy, but when I was on my feet, I was with someone for almost six years, and never passed gas in front of him. I'd be doubled over in pain instead of using a public toilet and even at my boyfriend's or close friends' houses going to the bathroom was like some kind of covert mission. I know it's a necessary part of life, but it's one issue that hasn't gotten any easier to deal with and the thought of having yet another person be put in the position to possibly witness that, makes me feel mortified. I have ridiculously high standards for myself and it makes it very hard for me to be willing to be with anyone, because my situation makes me so vulnerable. Every little insecurity I had before is worst, especially body image. When I took care of myself, I was the only person that knew about all my flaws (rolls of fat, acne, body hair,etc.) and I had the control to fix them without people knowing. Even though most of my worries are normal things that most women worry about, the difference is, I have to let other people in, in order to help me with them and in some cases I don't have a choice but to just deal with it, because I can't fix it. I mean, if you have to wax your upper lip (thank God I don't) it kind of defeats the person if you were to go around blabbing about it. It's all those little stupid things that average person can hide with makeup, fix with exercise or personal hygiene (shaving, blowing your nose, brushing your teeth/hair, using a q-tip) that make the thought of being intimately involved with someone seem so scary to me. I feel like it's bad enough my aides have to help me. When I see my body these days, it seems so alien to me. There's all the scars from my surgeries and the supra-pubic catheter sticking out of me, neither of which cry, "sexy." Plus, I have no more stomach muscles or muscles in my thighs and legs. I feel like jelly and I can't even work out. I watch my diet, but it's not the same. I know true love is supposed to see past all of the superficial stuff, but it's hard to believe when I can't see past it myself.
I give you a tremendous amount of credit, to be able to stick by your husband's side. He is very lucky to have you. Lord knows, people divorce over stupidest things these days and you haven't given up or run away. You are a special person. I've always admired Dana Reeve for staying by Christopher's side. I don't hold it against my ex-boyfriend for not staying, because deep down, I don't know if I could do it, if our roles were reversed. Your husband & I have no choice but to live with paralysis, but you do & you choose to stay. That really says a lot. I hope for your sake & your husband's sake that you could possibly get some extra help. It really surprises me that he only has nurses& no aides. It'd be great if you could have some extra people you trust that could stay and help with him a few extra hours a day, to free up your work load a bit. Anyway, sorry for rambling on so much! I wish I had a magic wand for all of us.

Sent from my iPad

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www.christinasymanski.com

Christina,

You mentioned something very interesting: that you do not blame your boyfriend for leaving you. My question is did he leave after your injury? if so how long after?  My boyfriend is a t12 injury paraplegic and the question that i get when people find out about him is," and you are going to stay with him?" My answer is a very energetic YES!! why wouldn't I. I love him for who he is not his legs or his ability to use them. to me it is very...how can i say this.....shallow...cant think of a better term... that because he cannot walk people expect me to leave him. I cannot understand them what they are thinking when they ask this it upsets me that i constantly get this question. Yes we now have had to rethink how we do things it is kind of a role reversal now i am the one driving among many other things i have to lead the way and be the loud voice to say excuse me for him to get through. Yes there are times when i really think about how the rest of my life is going to be with him and to tell the truth i know it will be difficult but i dont think i will ever regret it. So i cannot possibly know or understand why you would say something like that. I guess we find out who people really are and if they truely mean what they say when something like this happens. He is a great man with a kind heart it is very difficult to find a man like this now a days i could care less if he walks again but for him for his personal happiness i do wish, hope and pray that he does. As many times he has asked me why i have stayed and that i should leave i never have and dont foresee myself ever leaving. 

Always,

Scarlet

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Scarlet

"We could never learn to be brave and patient if there were only joy in the world."