Dan,
First let me say thanks for your compassionate words. You are very kind and understanding. Second let me tell you how I currently feel about marriage counseling for a caregiving spouse and a high level quad or I guess I mean me and my husband. I realize this is going to be like convincing a priest not to pray or maybe better said convincing a priest that I shouldn’t pray, but anyway here goes. I hope you take no offense from my perception (none is intended)…chalk it up to ignorance perhaps.
The thought of marriage counseling reminds me of something that happened a few months after my husband was home from rehab. I woke up in the middle of the night to find him in the midst of a huge seizure. He had never had a seizure before. I was terrified. It seemed that he wasn’t breathing. There are few benefits of a trach but instant airway is one of them. We always keep an ambu bag on his chair and one in the closet of the bedroom. Just habit I guess from when he was on a vent full time. I grabbed the ambu bag and the phone and dialed 911. I hooked the bag up to his trach and was all set. The 911 lady started in with her questions. One being is he breathing. I told her I’m not sure, or he isn’t breathing too well. She asked me if I knew how to do mouth to mouth. I told her that I have an ambu bag hooked up to his trach. She’s like “what’s that.” So I began to explain to her the ins and outs of an ambu bag and how it is used with a trached patient. All of a sudden in my mind I’m like WTF. I called her in a crisis seeking help and now here I am trying to make her understand how you bag someone. It became abundantly clear to me that I knew far more than her about how to handle this crisis and she wasn’t going to be of any assistance at all. I ultimately said just send an ambulance and hung up so I could continue with my ambuing.
I guess that’s my problem. I can’t imagine how a counselor could possibly understand the complicated dynamics of a marriage that deals with a high level SCI. Half of my husband’s doctors that treat SCI patients don’t really get it. At this point, I don’t have the energy to educate anyone. So my mind says the tremendous effort to actually find a therapist, get myself and my husband there, find handicap parking, tote a suction bag…blah blah blah only to discover that I’m dealing with another 911 operator type totally kills any desire or slight curiosity I have to find out if there would be any benefit to such counseling.
I’m worn out trying to convince people that this is a hard gig. Maybe I’m just not ready and some day I will be; who knows. If you asked me what could make me happier in my marriage, I could rattle off 25 things. But 24.5 of them would be impossible due to my husband’s total paralysis. It’s not his fault…I get that, but still that doesn’t change the facts. The things that would change everything are just not possible due to an SCI and a TBI. I think I’m stuck with doing what my mother always preached. If I heard it once I heard it 1000 times from her. You can just wear the same clothes and get glad. Since these are the only clothes we have, I have to find a way to get glad. I don’t think a counselor can help me find that. It’s somewhere inside me. I just need to locate it myself.
Trish
"Life isn't about waiting for the storm to pass...it's learning to dance in the rain."
