My sister-in-law meets us at the airport to drive us home. I’m even better when transferring from my wheelchair to the car now. Even more so, I’m smoother going up the ramp to enter my house. I can even feel my confidence growing a little more every day. This trip to London really has helped me reach a milestone in my independence. The fact that I have not been in my own environment that I have been used to since my injury has forced me to think proactively. This is exactly what they had explained when I was staying at the rehabilitation center receiving inpatient rehabilitation.
I am not sure of much else, but I just know this is the start of me grasping my independence, and it makes me a feel a little excited to where I’m having butterflies in my stomach. Yet, I also find myself making a mental not to fail. When I return to outpatient therapy this week we are going to work on popping wheelies, and the thought of it terrifies me.
Getting ready for bed is easier, so are using the bathroom and transferring to the bed from my wheelchair. I still use the sliding board, but I can already tell it’s not long before I won’t need to anymore. Each little milestone is doing wonders for my esteem. I really look forward to the day when I don’t need home healthcare assistance. Just to be able to have some privacy back is worth practicing daily when my attendant is not here.
My sister breaks my thoughts when she brings in my sleeping son and places him next to me on the bed. I smile down at him and thank her.
The next morning my attendant arrives to help me with my morning routine of bathroom care and showering. This time I am able to assist in using my catheter as well as participate in my own bowel program.
When evening comes again I am in the office surfing the internet and I can’t help but think there just has to be more people out there like me. It takes a lot of searching to find them, which tends to irritate me, but tonight I am successful in finding a chat group in Ohio. I start messaging a gentleman who is a paraplegic, but instead of using a wheelchair, he uses a standing frame that he can move around in. He shows me a photograph of himself next to his wife and teenage son. I find it really interesting that he has learned to use this standing frame as a means to get around his own home. I am not sure if I would use it to that degree, but then again, I have still so much to learn. He has been a paraplegic for almost four years.
It is really refreshing being able to speak so freely about the bowel program. Embarrassment isn’t a factor since this is a mutual routine we both have to go through. Only someone that is living this life can truly understand the depths of what it takes to be sure our body functions to the best of its ability.
Our daily bathroom has to be a routine, whether it is in the morning or evening. The higher level the spinal cord injury the more the routine entails. It already takes me two hours to get ready every morning. This gentleman tells me he’s got it down to one hour, and I am in awe. We even laugh about it because there is so much of our life that is comical, but can only be understood by us. After all, who would have thought that a part of my shopping list would be suppositories for constipation, and a pack stool softeners. The most nerve-racking part about this routine is if one doesn’t do it correctly then the possibility increases of having an accident during the day. I find myself confessing that I did have an accident in a store while in London and I had to rush back to my family home to change. The most humiliating part is that I couldn’t hide it from them, and that was a gut-wrenching feeling.
In addition to all the other advice he was giving me, he also told me I should not be wearing my digital watch now. I haven’t removed it since my inpatient at the hospital almost six months ago. He stated that I should start making mental notes of when I should do my weight shifts in the chair, as well as, when I need to “cath”. However, I am still not able to push myself completely up just using the strength in my arms. I am still building my upper body to be strong, but in the meantime, I can move from side to side to give a half a minute of pressure relief.
The more information I receive about my future, the more I want to know. I am my own experiment, and am very intrigued that my body will tell me things in different ways just because I cannot use my legs.
I still wonder if I will ever become muscular to the level this gentleman speaks of. Being so naturally petite, I feel as though I gained all the muscle I could when I was in rehabilitation. Yet, I know that I have to try so that I can be even more mobile. Just to go up a ramp or transfer from the bed to the wheelchair takes strength. Although I have found if I learn technique properly it tends to help where I lack strength.
Most of all, I still can’t accept that I will not ever walk again. I have recently been able to get a physician to privately tell me if there was really any chance of me regaining any movement in my legs. I stressed to him that I did not want to spend the rest of my life chasing something that just isn’t going to happen, but also that I am also a mother that needs to help my children with their own development. So, honesty from him would save me a lot of time, money and unnecessary anxiety. He had told me he believed I had three to eighteen months to regain. That was enough to tell me that I have a shot and must try. So apart from regular physical therapy, occupational therapy and conventional medicine, I have been receiving acupuncture three times a week and herbal supplements. I think if nothing else, I won’t have to look back and think “what if”?
When I received leg braces while in inpatient rehab I realized then I had nowhere near the upper body strength required to walk with crutches, but I could at least stand up with a walker.
My friend from Ohio and I discuss my first driving lesson next week. He says that this will be the best thing for me to gain back some sense of self. I can only wait to see what he means by such a statement.
With this injury I can tell there is a part of me forever gone, but I still can’t quite verbalize which part exactly. Nevertheless, I do understand that I am going through self-discovery, where I am questioning everything. The difficult part about this is that I can’t speak to anyone about the internal battle within. It’s too complicated, and just too raw - but maybe one day I will be able to.
I agree to speak more with my new friend tomorrow. The computer is becoming my window to the outside world. I have so many questions, but no one to really ask in a real-life setting. My mentor from the rehab center is a great wealth of information everytime she calls to check on me, however I always find myself hungry for more.
I have watched her take her wheelchair apart to put it in her car while she gets in. She had invited us to her house before my trip to London. At that time she demonstrated how she climbs in her bathtub and then back on her wheelchair. To think that I will be able to do this one day seems incredible.
There is no room for tears, only time to survive.