Avascular necrosis is a complication of Sickle Cell Disease that I have always been aware of. Since eighteen years of age, I’ve had back pain related to it. I have several collapsed vertebra that give me a slightly humped back and a fair amount of pain. It has only been the past few years, however, that I became aware that hip replacement surgeries are common for SC patients, often in their twenties; as are shoulder replacements.
Living with Sickle Cell Anemia, there are a great many things I prepared myself for in life. Needing a double hip replacement surgery and ending up in a wheelchair was NOT among them. Emotionally, I’ve been completely caught off guard by this new challenge in my life.
One of the challenges I’m having is coming to terms with how people see me. All my life, other than being thin, I’ve looked perfectly healthy. I’ve been able to walk and move about normally. Now I either hobble around with a walker or use a wheelchair. People look at me differently, and this in turn causes me to look at myself differently. I know it’s pride, but I don’t like looking as sick and feeble as I feel.
Right now I’m in the process of getting my insurance to provide me with a proper wheelchair. At home, we have a hospital-like wheelchair that I’ve been using. But it’s too heavy for me to lift in and out of my car. So when I go places, I have to use a walker or have somebody go with me who’s strong enough to get my chair into and out of my car.
Just recently, a person from my church gave me a lightweight wheelchair; it was a wonderful act of kindness that I am very grateful for. However, it’s not the type of chair I can roll myself, I have to have somebody push me in it. It’s very humbling.
For the time being, I am unable to move freely about on my own. Accepting this has been a challenge. I’m hoping once I get a proper chair for myself that I will regain the mobility I’ve lost and reclaim portions of my life that.
One of the things that is making this transition a bit easier is the kindness of others. I find myself confronted with the generosity of friends and strangers on a regular basis. Most people go out of the way to open the door for me or help me in some other way.
Though I am having to accept that truth that I may be seen differently by others, this new trial is allowing me to see others differently as well. It’s easy to think there is only darkness in the world. But more often than not, I’m seeing a light in others that I did not see before.
When we face a new complication from our illness, when our health requires that we change our life in some way, it helps to find the good in it. I personally try to search for what can be learned from this newest trial. We can always grow from the challenges we face. We just have to be patient and wise enough to find how.
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