Today marks six years of living with Retinitis Pigmentosa. Six years since my life was picked up and put on a different track. Despite my gratitude for still being able to cling on to most of my independence, the fear seeping in as my vision changes is palpable.
When I was told I had RP the first time, when I was 17 years old, I was advised that I would be blind by 25. My brain didn’t linger on the 25 part; it focused purely on the number of years left. Back then, I had eight.
When I was diagnosed a second time at 40, my first question was, “Am I going to be blind in eight years?” Even though the doctor didn’t think this would be the case, the vast swathe of unknown that forms the backbone of this disease, extinguishes any real possibility of knowing anything for sure.
Six years is a long time and in 2019, I didn’t know I would even get that. I should be happy and although I am, I’m also aware of what I have lost in those six years. The changes are significant, some days, more than others. The sadness that clouds almost every day is heavy, once again, some days more than others.
This year has not been kind so far. Having avoided being ill for ages – January came knocking with three deliveries for me to unpack. First it was covid, then the flu and lastly a chest infection, all back to back. By the time this last hurdle came around, I had nothing left in the tank to fight it and was placed on antibiotics. The whole ordeal lasted about five weeks and I’m only now starting to feel human.
Actually being ill or just scared you might be, weigh the same strangely enough, when it comes to the stress of it. My mind goes everywhere when I’m ill and it also reminds me how stubborn I am. I kept on going throughout, with minimal help even on the worst days My brain knows that I will need to make a substantial withdrawal from the help-bank one day so in its infinite wisdom, I’m banking my needs now. Laboring in the random logic, that people will be happier to help me when I really need it; especially if I don’t push it now or make a habit of it,
The truth dawned on me last week, during a phone call with my mum. I will probably need the most help, when there is the least amount available. My parents will be elderly or even passed on. My friends will be all back working full time and busy with their own lives. My daughter will be grown and hopefully living her own life free from this mess. Lastly and by no means least, my poor husband. I think about him alot. What my future means for him. How much more will he have to take on so I can continue to show up? The burden of me having to retire early and all the financial implications of that. How will he manage? Will he want to? Will I want him to? Do I want him to have a future where he just…manages?
It’s tough when you fall in love as equals and plan a life together, only to have the whole thing flipped over and left broken on the side of the road, wondering what the hell happened. He helps me so much already. His career, ability to earn more money and travel has been curtailed by me and that’s only six years in. I can still work and run a home at the moment. It’s just traveling that has thrown me off course so far and just that small adjustment has meant major changes in our daily lives.
When my husband was ill a couple of weeks ago, it was made crystal clear how much I relied on him for transport both to work and school. I had to lean on other mum friends to help with that and my days were longer by hours, as I made my way to work, by any means necessary, to keep things ticking along. We live in an area that’s not ideal when it comes to public transport so it’s not completely my fault but the sadness is still lurking.
Watching other mums pick up and drop off my daughter, not because I’m working but because I can’t do it, is a pain I don’t think I will ever get used to. Hearing their tales of how joyful it was to have multiple children in the car chatting and singing was difficult. It’s no one’s fault, it just makes my heart hurt a little. My daughter loved all the faff about it. Being able to travel in the car with her friends was such fun. I don’t want to deny her any experience that will bring her joy but sometimes it’s hard to watch her have these experiences with others. I will miss out on so much in the future and I guess I’m sad that this future is happening already.
The passing of time is a blessing but also terrifying when you have a degenerative disease. I guess that’s how I feel every day, blessed and terrified. It’s been six years of adjusting, mourning and letting go. I wonder what the next six years will bring? I hope I have another six years, I hope I have much more. Time will tell.