I am slowly becoming more active in the world of blogging, and have started following a number of blogs that are written by people I don't know. Recently I came across a blog and the first entry I read was quite profound. It dealt with one woman's account of how suicide had impacted her life, and how (5 years later) it continues to impact her life. It immediately made me think about my mother. My mum is still alive and well, she did not commit suicide, but for the last 8 years she has been battling a very rare illness which shut down her entire central nervous system, leaving her numb in 98% of her body, and unable to control her own motor skills. That's how she was when the virus first took hold of her. Today, if you met her you probably wouldn't even be able to tell there was anything wrong with her despite the fact that she hasn't yet reached a full recovery.
My mum is hands down the strongest woman I know. After 9 grueling months of hospitalizations, painful tests and physical, spiritual and emotional turmoil, the doctors finally presented her with the closest thing they could get to a diagnosis of her condition (it's a super long medical term that I would never get right so I won't even bother). It's literally a one-in-a-million case, and the best they can tell is it's a virus that attacks the nervous system, and they have no idea where it came from, why she got it, or if it will ever go away entirely, or even come back if it does. My mother didn't bat an eye, she simply asked "how do I get better?" The last 8 years have been hell for her. She had to relearn everything, from walking to driving to tying her shoes. Her brain was not effected by the virus, so intellectually she knew how to do everything, she just couldn't get her body to do what it was supposed to do, which at it's best was frustrating and at it's worse infuriating and overwhelmingly upsetting. Simple tasks like getting out of bed in the morning and walking to the bathroom were impossible without help. It was years before she could even manage to put on her own earrings.
I was still doing my undergrad when this all happened, and so I was away for the very worst of it. Daily doctor and therapy appointments, weekly tests and evaluations, constant driving back and forth, constant fighting with insurance claims and constant worrying... will she get better? will it be like this for the rest of our lives? how will we ever afford all of these medical bills? I would come home when I could, on weekends, and do what I felt I could, which wasn't much. Usually cleaning the house, buying massive quantities of food and cooking until every dish in the house was dirty. I would portion out meals and freeze them so that at least when my parents and brother finally got home from long days and late nights they could eat a decent meal. I was very detached from the situation for a long time, even though I had the conversations and I saw her every few weeks, I will never understand quite the level of sacrifice my dad and brother had to make for her during that first year and a half.
When I moved back home after graduation, the reality of mum's condition began to set in for me. Her energy was almost nonexistent. She was constantly exhausted from PT, OT, what little work she was up to, and just keeping up with her insane schedule of doctors appointments. Her medicine cabinet was overflowing with pills and supplements she was taking, and every meal was a lesson in patience as we counted out the pills she needed to take, and helped cut up her food because she couldn't manage the silverware quite right yet. She *could* drive again (she couldn't for over a year) but often still didn't because she was so tired, so we were all driving a LOT to get her where she needed to go. During all of this, I can only remember about 3 times when I saw her break down and give in to the despair that came with the frustration and uncertainty of what was happening to her. 3 times in 8 years... that's simply unreal.
I kept thinking about how I would have handled something like this happening to me... I can't imagine waking up one morning and not being able to feel my hands, or not being able to get my feet to support my weight. I can't imagine enduring what my mother had to endure day after day after day. It was a few years before she could even walk through the grocery story without help... years of wheelchairs, walkers, canes and motorised carts... errands took 5 times longer because we had to keep pace with her, and she had to take frequent breaks. And yet she almost never complained. In fact, she spent a whole lot of time apologising to us for being such a burden. I used to get so angry when she would do that because after all, she's my mother. She could never be a burden. She spent 20 years taking care of me, how could I not help take care of her when she needed us?
My mother's experience changed my life in so many ways, but I think one of the most important things it did for me was open my eyes to the lives of those who suffer from long term illnesses. So often we hear of someone who is suffering from some disease or another, sometimes relatively short ones, sometimes life long ones. When the news first arrives we shower them with love, cards, flowers, affection, fruit baskets, offers of help, etc. It takes about a month. Sometimes 2 or 3, for that to stop. People start to forget that you're sick. Or they don't know how else to help. Or they are afraid to try and understand what you're going through. Or whatever other excuses are out there. The ones who carry the heaviest loads are the family and closest friends, the next door neighbour who is willing to check in every hour to see if you need help getting to the bathroom because your son is at school and your husband had to go into the office at least one day this week so he wouldn't lose his job. The friend who calls you up to see if you feel up to going shopping just even for 15 minutes because she knows you've been cooped up in the house for 3 weeks with no real escape. The husband who nearly kills himself with neglect because he is so focused on meeting your every need that he is willing to give up everything to make you better. The boss who continues to find ways of getting you medical leave extensions, or sends home small tasks you can handle at home so that you don't lose your pay or insurance. The nurse who keeps meticulous notes of each visit so that even the slightest change in symptoms can be tracked and analyzed to find the best treatments. The therapists who begin keeping a pad and pen on their nightstand so when they wake up at night or in the morning with new ideas for treating you they can write them down immediately. The doctor who sits at the edge of your hospital bed, takes your hand and promises that God will help us all figure this out and beat it.
I have learned so much from my mother over these last 8 years. I have grown so close to her, and shared so much with her, and I am so proud of how hard she has fought. I got married last fall and not only was she able to walk down the aisle with my brother, she did it wearing heels... something she thought she would never be able to wear again. Our family has grown much stronger and closer as a result of her illness, but we have also learned to be a million times more patient with people, and with life. I have learned that when someone is going through a long-term illness, that sending a card when you first hear the news isn't enough. You have to keep sending the cards, keep making the phone calls, keep offering the rides or the groceries or the laundry or whatever you have that you can give... because sometimes those first 3 months are actually the easiest... it's the next 7.5 years that are so brutal.
Everyone is different, that is for sure, but I've found that many people suffering from long-term illnesses are desperate to make sense of it, and sometimes that sense comes in helping others understand it, or in trying to be an example and inspiration to others. My mum often shares with others about her experiences and how they have effected her, in hopes that it will open their eyes to people in new ways, or if they are also suffering that it may act as support and encouragement for them.
We don't know if my mum will ever be 100% recovered, but I do know that this illness will never ever defeat her... and for that I not only thank God, but I pray that her story can bring light and hope to others out there who are facing a lifetime of uncertainty like she has.
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