(I’m still working on a side project titled, Thumbs Down. Hopes Up., but as the site is getting built, I didn’t want to delay in getting this interview I conducted with Aaron Edge out into the world.)
Aaron is a friend of mine, though I wish we could have met under different circumstances. Our paths crossed after finding ourselves navigating the worlds of disease at about the same time. Aaron is managing the physical and emotional realities of his MS diagnosis while holding desperately to the life he lived before the complications set in, cycling, running, hiking and raging as often as possible. In this interview he details a bit about his experience without pulling punches and with complete honesty. People like Aaron don’t enter your life often. I’m fortunate to have him stumble into mine during my own obstacles, and I hope you all have someone similar in yours.
Describe your life leading up to diagnosis and how drastically it changed, both physically and emotionally?
I was at the top of my game, physically. I was ecstatic to leave the heat and the bloody streets and the roaches of a city of no angels. Los Angeles was not for me, and though I met some great people there (and created some interesting music), it was not a healthy environment. I had a killer job at Southern Lord as its art director, but it wasn’t enough to keep me happy in LA. And a curse (which I think I might have) can follow people like a stray, hungry dog that foams at the mouth, ready to sink teeth… my unhappiness was only going to grow. My wife and I packed up everything, moved back to the Northwest (our home) with giant smiles on our faces, for a better quality of life, our friends, our family. The curse followed me, and I was diagnosed with multiple sclerosis on March 6th of last year.
On a daily basis, how prevalent is the pain… how do you manage it emotionally… and how do you find the drive to continue on, seeking value and intensity in living, at this point?
I’m in chronic pain, every minute of every day. To be clear, I wake each day with “lead filled” legs… heavy and stiff. My hands feel as if run over by trucks, my neck can’t be stretched or an shock, electric in description, flows through my whole body with shooting pain. I take 22 pills, per day, some that help with pain, some with sleeping through the night, some as vitamins to help build back up my body’s ability to fight itself from attacking itself. I can no longer play any kind of musical interment, which was about half the joy in my previous life over the last 20+ years. I run and ride half as far, and half as often as I used to. I work at a bike shop, where the pain of hauling around two-wheeled devices is wearing me down. I can’t quit, because I need the dough. I can’t hold out, because I’m totally wearing thin, physically and emotionally. I’m depressed, I see little future honestly. Everything, and I mean even the things, that people don’t talk about in public, is different/worse. The only positivity I have is with my wife, we love to do and experience all the same things. But, love is only one portion of an existence, a human being must be happy with and within themselves. I’m not a happy person any more.
What are your thoughts on an “afterlife”, and have they been shaped in any way now that you have been forced to face your mortality in a more immediate sense?
I have none. I make no plans, I have no future. I wake up every day in pain, I go to bed every night in pain. With my wife, I trudge on, but neither of us know where we are going. I put on a mask of positivity for the first year after diagnosis, but I grew tired of the weight. I had become a spokesperson for the perfect survivor of MS. It was a lot of pressure on me to be that guy. When I took off the mask, my skin peeled off with it man. I feel empty and with all nerves exposed…
The experience of living with disease is comprised of an existence that hits all points of the emotional spectrum, from desperation to fear and from hope to accomplishment. What has been the trajectory of your emotional experience and have you felt value in embracing opposite ends of the spectrum?
I went backwards: hope, accomplishment, fear and now desperation.
The love you have for your wife is obvious in many of your expressions in social media, but managing a relationship through all this is undoubtedly problematic. What challenges have you two faced since diagnosis and how have you worked through them?
It’s been really, really tough on us… especially for my wife. At least I know what I’m going through, what hurts and when. She just watches me suffer, sees when things are tougher for me, and can only be there for me if needed. After the first year of my diagnoses, things leveled out a bit for us. We finally knew what worked, what didn’t, what to avoid and what things brought me comfort. We were both working, continuing our lives (together and separately), things became almost “normal”. But our normal is a nightmare for me, and on my hands and other things. Any time I get stressed out, my hands immediately hurt worse. Any time I am exited, for the better or worse… more pain comes with it. It’s all about nerves, with MS, everything is connected. It still hurts me to open the door for my wife, carry my share of groceries with her, sometimes I’m not feeling well enough to hike or run with her either. I cancel going out at night with friends, or shows. We are doing our best, and ya know, I can’t think of any other couple that would have made it through a move to/living in Los Angeles + multiple sclerosis. I owe it all to Rachel’s commitment to me, to us. She has fought so hard. She is such a strong, creative, straight-shooting woman, with not a single enemy on the planet.
Regarding being a “spokesperson for MS”, why do you feel inclined to step away from that, somewhat self-appointed, role?
Because it’s all such bullshit for me to try and continue it. It helped me get out of bed, to fight. It gave me a reason to live, at first. But, it’s not right for me to try raising that torch now, lighting a way for myself and others in similar situations. I don’t have the strength to do it any more. I don’t have the strength to lift that banner. I’m done trying to be a hero, I’m just a very pissed off human being, a guy in a lot of fucking pain, who is tired of faking a smile. And, I’m not the only person in chronic pain that wants to give up/give in to it.*
*…that said, I must thank everyone who did follow me, hold my hand, give me pushes when I needed them. So many folks bought shirts, records and attended live concerts where proceeds went to help my medical bills. $40K was paid off, a good portion of it because of awesome people around the globe, most I have never even met. That’s incredible and I won’t forget that/them. But, now the focus should be on someone else that needs all the encouragement that I once received. Let’s please find a new poster boy/gal.
I don’t think a lot of people really understand the emotional weight of living with disease, and what “hope” and “fear” mean in this context. Explain what “desperation” feels like…and why “hope” and “accomplishment” have dissipated for you.
Desperation is me wanting to buy a gun, because when it all becomes too much, when I can’t deal with it any more, I’m going to stop fighting. That’s harsh, but true. Not everyone is willing to admit that they think about that. Hope is for people that can’t make change happen for themselves and wish for things to happen or change. Accomplishment is me keeping a job and my marriage together. I believe in “do or don’t” and I don’t believe in “meant to be”, and it’s bullshit to think that I should look to an empty sky and pray to something that isn’t there. That’s time wasted. Also, my disease isn’t a “sign”, I’m not being “tested by God”, it’s a lame disease that wasn’t a gift to me, not a trial, and not a test of faith. Faith is for the weak sheep on this planet. Everyone dies, we know that to be certain, we wait for it to happen, or when we want to clock out, when we would rather not suffer any more, we pull our own plug.
[You obviously caught me in the best of moods here Scott.]
Do you feel a need to leave behind some sort of legacy when all is said and done (whether that is abbreviated from MS… or a full life by some other manner)… and if so, what is it?
Just this: “That guy Aaron went through hell, and he fought hard. He still ran up a bunch of mountains, he started those hashtags like #furtherfasterforever and #upness and #nevereasyalwaysworthit that help unite a bunch of rad people around the world. He rode a bunch of miles on his bicycle, proving that some intense pain can be ridden through. I still have that orange bottle that he made, and those shirts, that art, and those recordings too. He sure impacted a hell of a lot of people and got them off their own asses.” Or, how about, “I have no idea how I would have reacted and lived with something as terrible as MS. I have no fucking idea what that guy went through.”
You are obviously an individual drawn to extremes in perspective and experience, and I’ve seen this through your drive to keep fighting through MS and motivation to be physically active, seeking literal “upness”, if not emotional. Do you feel it’s that much harder to reconcile your MS diagnosis against your previous physical abilities?
Much harder. As you know, physical well being is so important in a healthy state of mind too. Just today, my hand pain and “shocks”* became so bad that I turned around from one of my rides, thus reducing my planned milage. Because of that, I felt defeated as I rode home.
*Lhermitte’s sign is an electrical sensation, often strong and very painful, that runs down the back and into the limbs. In many MS patients, it is elicited by bending the head forward (and in my case, also after my body undergoes a hard workout). Imagine getting electrocuted, exactly the same awful feeling.
Does the diagnosis bring you down even further, or compel you to continue seeking as much of your previous life as possible?
At first, I was pumped up, I faced it like a home invader… head on, I wanted to force it out (of my body). But now, it’s worn me down. I’ve started to accept my limitations, but not without the depression that goes with being defeated. I’m extremely against competition between humans, be that sports or otherwise. But, oddly, I found myself pitting myself agains MS. As if I could win, I put on the mask every day, I carried the PMA flag into battle. It has made no difference. I’m just more tired from being in the ring. Every general knows when their army has lost. It’s not easy to loose a fight against your own body though, against my own army. My best assassins have assassinated me.
What advice would you give to someone newly diagnosed with MS?
That’s a tough one. I only went to a single MS meeting and it was terrible. I saw many folks in wheelchairs, some were blind and needed handlers, others could barely speak, slurring and rolling their words while spitting. Everyone wanted to complain about their own pain, and tell me how terrible it will get someday for me. Thanx. Many of these folks, at least at this large 200+ meet-up that I attended, seemed to have saved up all their complaints and stories just for me because I was newly diagnosed. I was crowded around and then I was crushed. I never went back. So, I’m not the best proponent of AA-style meet and greets. I also might not go about telling the world about my diagnoses as I did. I’ve always been a very straight-shooter, very public about my feelings and stance on ideas, via my bands, art, etc.. My story was blown up by a few incredible money-raising campaigns for my medical bills and when one of my last recordings was released. I was getting fan email, doing interviews weekly, and it spread all over the internet. Someone else who is newly diagnosed might have trouble with the spotlight that it cast on me. I really have no advise for a newly-diagnosed person. I don’t want to scare them, I don’t want to tell them what they are in for. I don’t want to talk to them at all, actually.
And what advice would you give to supporters?
Rally for them, ask them what they need from you without being overbearing. Find out information on your own, but do not tell them about new studies and cures and wonder drugs. The recently diagnosed has way too much fucking information to digest from their most important source: their neurologist, who has all the correct info, not something you read on line. Ask them politely what is tough for them in while in public. For instance, when my hand pain is at its worst, I constantly rub my hands. It would be awkward to be asked all the time, “hey man, what’s up with yer hands? Ya nervous or something?” That gets really old. It’s also hard for me to carry anything heavy or open doors sometimes. My close friends won’t make a big deal about this in public.
And to care-givers?
Ugh, another crazy hard one to answer. The care-giver that I know is my wife, Rachel. I just asked her, and she replaid, “It’s case by case and a day by day thing. Have patience with the diagnosed person. With Aaron, I kept out of the way and let him come to me when he needed help. I didn’t baby him though. It’s hard to find the balance between giving enough and giving too much.”
Despite all your pain, adversity and emotional struggles, what are the experiences or perspectives that give you moments of relative relief in your days?
Honestly, the only times that I feel relief are:
1.) When I’m sleeping, because that’s my only totally pain-free hours.
2.) When I see someone who is worse off, missing limbs perhaps.
3.) I can’t think of another…
If you could have known you would have MS early on in your life, how, if at all, would you have lived differently?
I would have joined some band that was incredibly popular, no matter what kind of music (even terrible music), so that I could travel the world while on tour and see as much of this planet as I could. I would have sold out, in my eyes, creatively. But, I would have seen it all. Now, I’m scared to even camp overnight alone. I need particular accommodations, and can’t be too far from bathrooms (people with MS often have bladder issues and worse). I can’t walk in dimly lit rooms, because my sight is miserable in dark situations now (MS effects my optic nerves and my vision gets cloudy) and I might fall or be embarrassed by how I walk, now off-balance. I would have started running and cycling sooner as an adult, or never stopped as I became a teenager. I would have done more activities with my Father, more hiking and skiing. I didn’t do that enough, I didn’t hold onto that connection with him. Perhaps I would have not gotten tattooed, so that the United States Coast Guard would have accepted me when I applied in the late 80s. I would have seen the world that way, perhaps. I would have incredible health insurance and a great salary for myself and Rachel. There’s too many things I guess…
In relation to MS awareness or research, are there any organizations you respect and would suggest people look into if they want to get involved?
Not a one, I’m not in that loop. I never do research, my neurologist is my only information. I will say that the drug, Gabapentin, brings my pain level of 10 down to about a 6, so I will give that drug a shoot out. The only side effects are drowsiness (that never effected me), weight gain (that certainly did effect me) and depression (which might be effecting me, but I take an antidepressant as well).
So I know you are stepping away from Upness for the reasons you outlined above, and you’ve mentioned working on a new project. Do you want to explain that a little and what you hope to accomplish with it?
When you and I first started talking, I had an idea in the back of my mind. It was something less positive and more punk. It’s on the back-burner, like so many other things in my life (travel, bands, etc.) until funds, time and stoke are available. I’m just trying to stay afloat right now, no plans, just head above the water while the sharks circle ‘round me.
Can you give me a rundown of the projects in which you’ve been involved (music, art, etc.)?
Bands I’ve been in (alphabetized):
2 Men Dead, Alternate Society (drums)
Autumn (guitar/backup vox)
Backside Disaster (guitar)
Blood Buddies (drums)
Brothers of the Sonic Cloth (drums/backup vox)
Day of Lions (drums/samples)
Great Anti-listen (vox)
Hand Be Damned (drums/guitar/bass)
Harbor Island Mutiny (guitar/bass)
Himsa (guitar/backup vox)
Iamthethorn (guitar/drums/bass/backup vox)
Les Gants (guitar/bass)
Mountain of Teeth (guitar/vox)
My Favorite Backpack (drums)
Peril on the Sea (guitar/bass/drums/vox)
Potential Idol of Destruction (drums)
Process Black (guitar/bass)
Raw Umber (guitar/bass/drums/vox)
The Red Sect (drums)
Requin (bass/backup vox)
Rote Hexe (guitar/vox)
Set of Standards (drums)
Spoken Word (drums)
Structure 24 (vox)
Swallowing Swords (guitar/vox)
The 6-Minute Heartstop (drums/samples)
The Horde (drums)
They Shall Take Up Serpents (guitar/bass/vox)
Tsuga (drums/guitar/bass/backup vox)
West of Zero (guitar/bass/vox)
Design clients (alphabetized):
1-2-3-4 Go! Records, 3 Inches of Blood, 800 Octane, A Chance Without, A Fragile Shade, Acephalix, Advent Records, Aiden, All Hallows Clothing, Alpinist, Anatomy of a Ghost, Anchor Records, Atreyu, Aurora, Backside Disaster, Balaclava, Baptists, Black Breath, Blackcloud, Black Cobra, Blackout Records, Bleeding Through, Bluebird, Bobby Hellfire, Body Graphics Tattoo, Boris, Briz, Brothers of the Sonic Cloth, Brutal Fight, Burning Love, Cascabel, Church burner, Clarity Process, Clifton, Closed Casket, Countdown to Life, Crosstide, Darkest Hour, David Bowie, Day of Less, DC Vegetarian, Dead Again, Dead in the Dirt, Dead Teenager Records, Death By Stereo, Drainland, Drop Six, Drown Mary, Dualesc, Dwell, Eagle Twin, Early Graves, Earth, Eat Your Heart Out, El Cerdo, Emerald City Tattoo, EMI Records, Enter the Race, Everything That Kills, Everything Went Black, Excursion Records, Fall from Grace, Fearless Records, Fight Scene, Figure 4, Fontanelle, From Ashes Rise, Gatsby’s American Dream, Generally Nautical, Go Booking, Golden Saddle Cyclery, Goodfellow Records, Gorilla Mind Society, Harkonen, Heart, Hell Promise, Hell’s Kitchen, Her Candane, High on Fire, Himsa, Ichabod, Inked in Blood, J Shogren, Josh Bragg, JoWood, Lahar, Lebanon, Longshot Records, Mark D., Martyrdöd, Metalblade Records, Microsoft, Middian, Might as Well be Dead, Misantropic, Monster Skateboards, Moth Attack, Mudshark Studios, Myiasis, N.C. Punchout, Neverstop, New Age Records, Nihilist, Noothgrush, Note Farm Records, Nuclear Death Terror, Of Feather and Bone, OFF!, Oiltanker, One Last Thing, Paul Speer, Pelican, Planks, Porkchop Screen Printing, Prosthetic Records, PRSfit, R Styles Records, Rainstorm Records, Rainstorm Studios, Rapid Fire Process, Rat City Rollergirls, Reproacher, Revelation Records, Revenge of Me, Rise Records, Rocketstar Records, Running Wild in Cordova, S2C, SanDisk, Sarabante, Seven Sisters of Sleep, Sewnshut, Shadows Fall, Shamelady, Siris Records, Skarp, Sleep, Southern Lord Records, State of Grace Records, Steve Carter, StonerRock.com, Summon the Crows, Sunn O))), Temperance Records, The Accused, Agony Scene, The Alliance, The Butt Frenchers, The Cassettes, The Cinema, The Escaped, Murder City Devils, The Solo Project, The Vegan Shoe Store, This Time Tomorrow, TKO Records, To See You Broken, Unlovable Inc., Urban Khaos Clothing, Varsity Finish Line, VegNews, Vicci Martinez, Victory Records, Watch it Burn, Weedeater, Winter, Woke Up Falling, Wolfbrigade, Xibalba, YOB, Zeke, Zoroaster
Last musical endeavor:
Because I wish to be cremated when dead, the highest honor bestowed to/on me would be an inscription on a park bench along the Wildwood running trail in Forest Park, in Portland, OR. It would read, “This life is black and white, there is only pain and pleasure, with room for nothing in between.” — Aaron D.C. Edge, 1973-20XX