Before I was even diagnosed with rheumatoid arthritis my passion was always in heavy metal. I occasionally wrote about music which is where my interest in blogging about my health journey started. Before arthritis I also listened to Chicago doom metal band Novembers Doom.
Now I have a lot in common with their vocalist which I know through social media – I asked him to share his experience as a metal musician living with arthritis to show this disease can impact anyone at any age.
What disease/conditions do you have?
I was diagnosed with sever Spinal Stenosis throughout most of my spine, with the worst being my lumbar spine (L4-L5). Also Ankylosing Spondylitis was found in my hips and lower spine as well. This all stems from Autoimmune that is genetic, and I was born with this. To put it simply, my bodies natural defense which usually fights off things that don’t belong, is attacking it self, and things it should not. There’s over 200 things that autoimmune can cause, and I’ve dealt with arthritis, psoriasis, iritis, Reiter’s syndrome, to name a few.
How were you diagnosed? When?
I was diagnosed around the year 2000. I don’t remember the exact date it’s been so long now, it feels like it’s been a part of my for my entire life. My back pain started at a young age, but since I was in Martial Arts most of my teen and young adult life, there was always a simple explanation of why I had pain and discomfort. The pain would come and go. It wasn’t until the pain arrived and never went away, that my Doctor ordered MRI’s and the Stenosis was discovered. The degeneration of discs in my spine had already broken down to where I was told I had the spine of an 80 year old man. This is hard to accept being as young as I was at the time.
Tell us about your music career.
We started in 1989 and have released 11 full length albums. I’ve been lucky enough to have travelled to and seen many places in this world, I would have never had the opportunity to see. I don’t know when I’ll need to call it quits, but when I do, it will be on my terms, not the diseases. I will maintain control of that. I have to.
How does your condition affect your ability to perform or write music?
Stage performance is hard. It’s hard to concentrate and stand through the pain. Lyrics are forgotten, and at times, all I want to do is quit. Writing is easy. It’s a therapy I can do from my comfort control. Performing is a different animal.
Have you had to make any adaptations to play?
Touring is no longer an option. Multiple shows in a row has become an issue. We have to be selective of when and where we play, and I certainly need to make sure certain requirements are met for comfort. It can come off a bit “rock star” but it’s not. It’s for the preservation of health and being able to haver a few days in a row to keep moving. I’m lucky my band understands my limitations and we’ve been able to work around this.
How does your condition influence your writing?
I have learned over the years to use my condition as an advantage in creating. Since I decided to wear my heart on my sleeve lyrically, if the words aren’t directly related to the condition, I can’t help but be influenced by the mood or mental state it puts me in. I write my best when I’m in that state. It’s a good way for me to try to turn “Bad days” into productive days. I keep telling people all sorts of things I half believe, like “These are the cards I was dealt and I’ll play them.” Where that’s true, it doesn’t make it easier on my, or snap me out of pain, or a defeated mental state. I need to use it to fuel something better. Hopefully something that an reach people in a positive way.
Is being creative a release for you?
Absolutely. It helps me focus on something other than the pain and depression that comes with this sort of thing. I have found that the more I do nothing, the worse I feel. Keeping busy and moving, physically or mentally, can help get me through the day. At one time in my life, Martial Arts was my release from everything. Anger, depression, stress, sadness… What that was taken from me due to this, I needed to find something else to help me cope. Lyric writing, music, and basically anything creative or project based helps trick my mind, and refocus.
What life lessons did your diagnosis teach you?
Take things slow, and day to day. Today might be a good day, but you can’t overdue it. Tomorrow for no reason may end up being a horrible day. It also teaches compassion. It gives you a new outlook on others who are ill, and not obvious to the eye. It taught me to be strong, and patient. This is a marathon and not a sprint. It taught me about limitations in myself and others.
What lifestyle changes have you had to adapt?
Martial Arts was the first thing to go. My job was second. I couldn’t be counted on to work, with crippling pain. Permanent disability had lowered my quality of life, to a sometimes boring state. I do what I can to keep strong mentally, but I did enjoy working. I loved what I did, so for me, sitting on a couch and just managing pain day to day isn’t a productive life. I try to be as productive and helpful to others I can, to still feel some sort of worth. I try to walk as much as I can, when I can.
Are there any stigmas or misconceptions surrounding your illness?
Absolutely. As mentioned, when people can’t see it, you must be lying about it. You can’t look healthy, and be sick. I have a strong façade on the outside, to look strong for my family. No one wants to see you in pain, so you put on your strongest mask, and attack the day. This also means, those who don’t know you, see a false representation at times, and try to belittle the illness. It’s only when someone hurts they back, and realizes how much back pain controls every movement you have, do they tell me they can understand what I must deal with.
What keeps you moving forward?
My family in Nikki, my daughter Rhiannon, and the love and support from those who love me. My band is a great outlet in writing lyrics and performing, but those limitations are also staggering. It’s not something I can do in any great capacity now, or ever again, so I am extremely limited on what we can do. I just keep fighting for all the above.
What kind of help have you reached out for?
I am very stubborn and determined, so for me to ask for any sort of help, is rare. I keep telling myself, I will do everything I can do, until the day I can’t anymore. It keeps me feeling normal, and in control of something I know I have no control over. It’s mind of matter, so unless I’m having a horrible day with pain, I will not ask. If I do, it’s usually small things. The thought of even walking into another room to get something is sometimes overwhelming, so I may ask for help in that way. Other then that, I’m too prideful and stubborn to ask. Maybe to a fault…
Was there anything you had to give up because of your condition(s)?
Martial Arts. This killed me inside. This was my life. I dedicated 20 years to this, and wanted to teach and open a school for a living. This was take from me, and it’s the single hardest thing I have had to give up, in the capacity I once did. There’s always ways to be involved, but not like I wanted to me. It was something I was good at, and my potential was there to be so much more. Other than that, you have to give up a quality of life. You give up things most people take for granted. Long walks, amusement parks with family, hikes, sight seeing without being the one who needs to keep resting, holding everyone up… it’s a hard way to live and expect others to understand all the time.
What is the most annoying thing people say to you about your condition?
“You look healthy to me.” It’s amazing how people are judged based on their eyes.
Does your physical condition effect your mental health at all and how?
Absolutely, and this is one thing that took me years to learn to deal with and control. After you battle through the depression, denial and acceptance stages, you’re broken, and need to re build your mental strength to help move forward. Not everyone can do this. Even to this day, I have my moments, but I have to keep reminding myself of why I fight. Family. Friends. Music. Just the love for life, regardless of the cards I was dealt. Play that hand, and try to win.
What advice would you give to someone else with your condition that has just been diagnosed?
The very same advice I mentioned above. “Don’t give up.” I would also include, get yourself a good support group. Someone or people who understand what you’re going through. With certain diseases, if people can’t physically see you’re ill, they assume you’re not. If you don’t LOOK handicapped, and you use our legal placard, you will receive looks, comments, and sometimes confrontation. People can make things harder on you, based on false opinions. It’s easier if you have those around you who believe you, support you, and love you. Love goes a long way to better health and dealing with chronic illness and pain.
So much of this resonates. The wanting to give up, the ‘but you LOOK so healthy’ honestly the most insulting thing to say, as it diminishes our struggle. Great interview, thank you!