While this blog is almost exclusively about music, I have chosen this time to post something of a personal nature. If you think it might help someone you know, pass it on. If it helps you, that pleases me greatly. I share this humbly and with respect.
A Carer's Story
When someone is struck down by an illness, injury or other unfortunate occurrence, the consequences almost always have a ripple effect on those around them - partners, family and friends all feel the effects of the disease or injury, and struggle to adjust along with their friend, partner or family member who has been afflicted. The closer the relationship, the keener the empathy, and it is never easy. In June of 2013 my wife, best friend and life partner Donna was diagnosed with MS - Multiple Sclerosis. That news changed our lives. Donna had to come to grips with the fact that she now faced dealing with a condition that would be with her for life (the current medical understanding), and I had to come to grips with the same thing - after all, she was my soul mate, and what one faced, so faced the other. The journey is not an easy one, and it is one faced by people all over the world every day. Each situation is different, each story unique. This is my story.
Donna's diagnosis came as a real body blow. The first symptom that presented itself was optic neuritis - an infammation of the optic nerve that impairs vision. Optic neuritis can present as a separate condition, so we were hoping for the best until the scan results came back showing brain lesions. At that point, we were told that it was MS. Even then, the real import of the diagnosis took a while to sink in, while Donna spent four days in hospital on IV steroids to bring down the inflammation, and I sat at home in between hospital trips to try and get my head and heart around what was happening. I was grateful that those four days were busy ones spent running between hospitals (my mother-in-law was in a different hospital at the time), as any quiet time alone rapidly descended into subdued panic. What was happening to my wife? Why her? Why us? What would I do if... by the time of the official diagnosis, we had both studied MS thoroughly and understood as much as was possible about the disease. Nothing I had read prepared me for the gut-wrenching reality of facing down a threat to my wife that I was powerless to fight.
A full-time carer faces many challenges, and when the carer is the spouse of the person being cared for, everything is magnified tenfold. The feelings and emotions are many and intense in any case, but caring for your own wife is at once a joy and a terror. While I never once begrudged my new role, I had to continually deal with my own inner turmoil and demons whilst performing my duties as carer and my life as husband. I know that I am not alone in my experience, but there were times when I felt like the only person in the world who had felt such loss or despair. Sometimes the head and the heart work on two entirely separate agendas, and that's part of being human. After the initial shock and adjustment came a form of grieving, then anger. I was angry that my life had been changed without my permission, furious that something had been taken from me without notice. I wanted to punish whatever had hurt my Donna, but there was nothing there to fight against, nothing to destroy. This led to feelings of impotence and helplessness, of failure as both a man and a husband. As strange as it may sound, there were also feelings of recrimination - if I had been a better husband, maybe she wouldn't be sick. Had I cared more, perhaps Donna's brain might not be marred by lesions now. I also felt sorry for myself, wallowing in self-pity over the loss to my nice, comfortable world. Recognising this in myself brought on feelings of sickening guilt that made the earlier recriminations look like narcissism. I truly loathed those feelings, and felt unworthy of such a strong, brave wife. I was a failure. A weak, stupid failure. It was around that time that it would have been very beneficial for me to be told that all the things I was going/putting myself through were perfectly normal, that I was not alone, and that it was okay to ask for help. Most major cities have a support organisation for carers, and sometimes it is a big help just to know they are there. When needed and utilised, they can help save sanity and lives. There are some things that just can't be faced alone, and I was dumb to try. Fortunately, I woke up in time, and as of this writing am seeking help.
Donna's MS was relatively mild compared to some cases - there were lesions on her brain but not her spine, so at least her ambulatory functions were pretty fine. What we do have to deal with apart from the vision issues are pain, cramping, severe fatigue, vertigo, mental 'fuzziness' and sensory overload if there were too many audio and visual stimuli, meaning trips to shopping centres and crowded places were out. I should mention at this point that Donna is a particularly gifted singer and entertainer who has performed around the world to never-less-than-stellar reviews. Watching Donna go from holding an audience in the palm of her hand to not being comfortable with a crowd broke my heart, especially since I had proudly stood on stage with her for so many of those times when she held a crowd spellbound. The big thing that we had in our favour in our journey to remission was Donna's enormous willpower and strength of spirit, which still stands me in awe. She decided early on that she was not going to succumb to MS, but would fight to regain as much of her life as was possible. Her courage inspired me, and continues to do so. We also decided not to go with any of the various drugs that were available, opting instead for an array of alternative treatments including vitamin and mineral supplements, better diet, light exercise when possible, and - very importantly - a positive outlook. Donna has put me to shame in this last respect, kicking her symptoms to the kerb for a day to record vocal tracks for a music EP, managing the energy to be a loving grandmother on a good day, and still - still - giving her husband love and words of encouragement when he was feeling tired or flat. With the help of many friends and family members, we are achieving a new balance, finding a new normal, and hunkering down to fight off the menace while doing what we can to help raise MS awareness and ultimately find a cure. Plans have been made for music projects that are both flexible and low-stress, and we are blessed with a loving and tight-knit network of people who are determined to not see Donna fall as I am. We are not done, we are not beaten, we will endure, and we will triumph. I believe this because the bravest, most beautiful woman I know taught me to.