Reeve Foundation Paralysis Community

I have been paralyzed for 5 1/2 years now. I spent the first 4 months in ICU where the family could only visit 3 times a day for a one-hour. As I look back on it now I see it as the time in hell I deserved for being the way I was. I was married also in the beginning and without her help I would not have made it this far. She really helped me get through a lot and helped me to become strong minded again. After a year and a half she could not take the pressure any longer and left. I lived alone for nearly a year before my grandmother and I decided it would be best that she move in. Well about 6 months ago she passed away leaving me here all alone again. I have become a very strong person over the years but I am having a hard time with the loneliness. I always pray hard and do sometimes feel like maybe my grandmother and my mother, who passed away when I was 10 years old, are still here with me. It does kind of make it a little easier but at the same time it just makes me want to be with them, were I could then come back and be with my children.

Anyway, the quiet since this has came about has started to mess with my head a little and I was wondering if anyone else experienced anything like this. Please help if you can, my name is Brandon Byrd

Hi, Brandon!

Welcome here!

In answer to your question, I'm thinking maybe a local support group would help. Are you imterested in any sports? That would get you out of the house and give you an opportunity to meet other people.

We have fact sheets on both of these--you can find them online on the PRC website. Or, you can call me or any of the information specialists for more information. The phone number is 800 539-7309. My extension is 7202.

I hope this helps!

Donna

  

Hey Brandon,

You can also reach out to your local independent living center. Independent Living Centers are typically non-residential, private, non-profit, consumer-controlled, community-based organizations providing services and advocacy by and for persons with all types of disabilities. Their goal is to assist individuals with disabilities to achieve their maximum potential within their families and communities. They would also be great place for support from others in the disabled community.

Independent Living Centers

Take Care !!

Jenn

Brandon,
My name is Melanie and after reading your post I felt compelled to write and wanted to thank you for being so honest. It really touched me and opened my eyes a little bit. I was hoping maybe you could give me advice with my situation.. My best friend was hurt in June 2008 and we have a close circle of girlfriends. We have all tried to be there for her by calling her etc. and she seems like she is really upset with us most of the time. This has been happening a lot the past few months. Have you found yourself in a situation like that? Is there anything I could do or say? Be strong Brandon and prayer has helped me through everything in my life. Please keep the faith :)
Melanie

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Melanie :)

Hi Brendon, I understand what you mean. I had my accident over 23 years ago. My father died not too long after and many of my friends at the time were just never around anymore. I don't know what the level of your injury is, but the suggestion made already about joining a community group of some kind is a great idea. I know it's easier said than done. I'm a high level paraplegic and one thing that helped was me being able to work. Even if I didn;t like people around me or they didn't like me, having them around was fantastic. And I made many new friends that way too. You can also find other interests - check out my website: http://www.rollinground.com rolling round.

It's not that she is really upset with you guys, it's just hard for people with paralysis to stay motivated. It may be that you are trying to get her to do something and she is trying to but can't because a lot of times people like us would just rather lay around and do nothing. Saying that, it doesn't mean that we want to, it's just easier and that is something that is hard to overcome in the beginning. I have definitely found myself in your friend's situation and the best thing for it is for you to keep an open line of communication with her and to try to check on her as much as possible. Also getting her in contact with people like me would be a big help. My e-mail address is byrdbrandon01@yahoo.com. I would be glad to talk with you guys or just be someone that she can relate to.

Hi Brandon:
Thanks for your post on loneliness. Ever hear the saying that you can be "alone" in the middle of a crowd?  Loneliness isn't always about being around people but more about "feeling connected".

You have suffered lots of losses in such a short period of time, your marriage, your injury and then your grandmother.  All these things take an emotional toll and can make you want to be isolated and alone. Eventually being alone can feel pretty lonely.

I was injured almost 20 years ago.  I lived on a second floor apartment with no elevator. Back in those days, if you had a place to go, it didn't matter if you could get out again once you returned home. Being isolated can get very depressing and lonely if you let it.  I made a decision very early on to stay active and to stay busy.  Each day, I get up and get dressed---doesn't matter if I have no place to go.  I also made sure I connected with someone at least one time each day. There was not alot of internet 20 years ago, so I either called or had someone over. I also set weekly goals for getting off that second floor apartment. I made a conscious decision to not be held captive to my paralysis.  It was brutal in the early days. Friends disappeared, I couldn't find someone to get me out of the apartment, etc. Add to that the divorce I was going thru and sometimes lonely looked good.

Fast forward almost 20 years.  I work full time, am raising a family and still push myself every day to get up, get dressed, get out of the house, talk to people.  There is a big difference in our injury level since I am incomplete quad.  In the early days, there wasn't much difference and I just pushed forward.  It became a good habit.

Brandon, you took two huge steps 1) you started this thread and 2) you reached out to help another person.  Know that loneliness doesn't have to be forever and that you can work to change feeling lonely.  One last thought, have you worked on any grief counseling? You have had some major losses.  I am sure Dr. Dan can advise much better than I can on this subject but I would urge you to look at how sadness and loss makes it easier to stay stuck.

Please keep posting.

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Thank you,

Every day I wake up is a good one.
phf 59-08

I can understand your loneliness . I also live by myself I have been in this chair since 1995 I was very active after with my kids and working til I got fired for missing to much work. Anyway the kids are gone and I am by myself it is very lonely. I resorted to pets. I have 5 dogs now but they dont replace human contact. I have a medical problem now that keeps me in bed and I cant get out. But this computer keeps me company and if you ever need to talk I would more than be happy to listen to you. I wish you he best.

Hi Brandon,

I can totally relate to your situation. I was injured about 5 1/2 years ago as well and things have been tough for me. I had a girlfriend when I got hurt who left me and it took me a while to reconnect with my friends. I also suffer from neuropathic pain which limits me from getting out as much as I would like to. I am close with my grandmother as well and she is getting quit old.  I think the thing that really helps me get by is just staying connected with friends and getting out as much as I can. In my home town there are quite a few events throughout the year that I make sure to get out to and that has been a great way for me to meet new people. I still get a little lonely now and then, but staying connected and getting out as much as possible has definitely helped me an awful lot. Since getting injured, my life has gotten better the more I try to live as active a life as I can even though sometimes it's hard and painful. Another thing that helps me is exorcising with my resistance cords often as I am a c7 quad and have good arms. I understand that that's not possible if your a higher level quad, but the biggest thing is interaction with people.

I wish you all the best Brandon.

Hang in there,

Chris

hi brandon, when did u get injured? i've recently completed 5 & half years since injury. 11 oct '04 anchorage, Alaska getting into car to go to work as RN...attempted murder, stabbed multiple times by unknown, injured C4-C5 hemi-plegic.

just over a year now,  i am completely independent...very exciting. i enjoy my solitude & when time to be w/others, then i join them.

ur lucky to have both mom & g'mom there w/u now...also, there is one who is ALWAYS there & loves us more than any human being could ever love us. that is our spiritual father.

a trick i learned since paralyzed is to keep a gratitude list everyday, especially when times are tough. this is my lifesaving medicine.

where do u live? i live in Florida.
best in all u do, blessings,
deborah

in response to Melanie's letter:

what i find is that w/a sci sometimes groups of friends don't feel as sincere as individual attention or relationships. it's awkward being disabled which makes it hard to believe u really like me or fears that ya'll will laugh at me 'cuz i can no longer do what ya'll are doing.
bring a small gift, a card, a poem...demonstrate U, as an individual, really do care & love this person.
best wishes,
deborah
sci C4-C5

Dear Brandon:  Loneliness can be disheartening and overwhelming for people with or without disabilities. I am a person with a spinal cord injury for 18 years. I did a lot of crying in the beginning, It took me about 6 years to stop grieving,  I started back to school 2 years after I came home from the hospital. I had my mom and sister and brother and some other family and friends' support.  I sought counseling to talk about my feelings. I went to church for the first time.  My life is challenging, and my personality quirks which are exaggerated because of frustration; can cause some highs and lows in my daily life.  Take things ONE DAY AT A TIME. Congratulate yourself for how far you have come. Put the past behind you gradually. See the value in your living each day. Make plans. Smile. I am a believer in God's love, grace, caring and mercy.  He has brought me through.  Don't try to figure it all out. Someone once told me: "do not let this world drive you crazy."  Peace and rest to you. Pray and ask God to guide you each day .Pour out your heart. We cannot predict this life. We cannot control much of it. We can know for sure that God has a plan and purpose for good in our lives. Life ain't no crystal stair, and water always seeks it's own level.  Embrace who you are , where you find yourself and create the life that the freedom which you still have will allow you to achieve. Seek out your level.... The Sun is in the sky even in the darkest of nights....Be gentle with yourself. Believe in the constancy of good whether you can see it or not. The best is yet to come. We cannot grow without challenges....Time heals all wounds. Forgive your own failings and the disappointments of this life.Have courage. At my age, I do not have many people left in my life either who are close to me. Due to my injury I missed out on many opportunities to grow socially. I keep the faith though, and I will believe, and be an over comer until the end. I hope that you will have access to a support network soon. Peace....Kelly

Dear Brandon

Welcome to group.  Yes that happen to me and yes it can mess with your head bad.  I was a Nurse/Respiratory Therapist be for I got the Chair from Lyme's Disease and Yes she could not handle it any more either because of Mother and me.  I feel for you.

What I did since, there is load of work to be done in improving the Cities for the Handicap I have been working on this Issue. and that has help me a lot.  you might try it.

Bud

It hard for her, as she reminisce all the thing she use to do before.  I would tell you not to give up on her but going be hard since, most of every thing is not handicap accessible.  Just try taking her with you that would help .

Bud

Hi Brandon, thank you so much for joining us. And just look at the outpouring of care and compassion your letter has triggered!
This business of loneliness may have been with you to a certain extent since your mother died. Of course it was made worse 5 1/2 years ago and what the hospital did while you were in ICU may have made matters even worse.
Something we can all relate to is that we feel no one can fully understand what it's like to be us. And that might also be a feeling that 10-year-old Brandon experienced also. And that is the underpinning of all loneliness -- feeling that we are not understood. And worse, feeling like we never will be understood.
The only way to deal with that is to tell your story as fully and openly as you can to someone who is willing and able to listen with care and compassion.
So I invite you to talk about your life than and now, either here in this forum or I will be glad to communicate with you privately through e-mail.
The quality of loneliness was the most painful experience I had after my accident 30 years ago. Made worse when my wife left me and my beloved sister died shortly there after. But the more I was able to open my heart, the less alone I felt. And 30 years later, people still cannot understand what it's like to be Dan Gottlieb, but that sense of aloneness is no longer painful.
I wish the same for you and I hope to hear from you.
Dan

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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