Life With Lupus: The life I lost
I have the deadly disease known as Lupus. The version of Lupus I have is the most common, Systemic Lupus Erythematosus (SLE). True to its name, SLE is a systemic condition throughout the body. In addition, I have Lupus Anti-Coagulant and Lupus Anti-Phospholipid which causes my Lupus to impact my blood.
So What Exactly Is Lupus?
In short and perhaps unscientific terms, SLE is my own immune system betraying me and deciding to wage war upon various systems in my body. My immune system incorrectly targets these systems as enemies and marks them as invaders. Then it targets my cells, tissues, and organs in those systems for destruction. This destruction begins with the inflammation and its other biochemical weapons and agents to kill cells and shut down organs. My Lupus likes to focus on vanquishing its own perceived axis of evil in the form of my circulatory, nervous, digestive, and musculoskeletal systems.
My SLE also features some collateral damage in the form of Anti-phospholipid antibody syndrome, Raynaud's Syndrome, Transient Ischemic Attacks (TIAs aka mini-strokes), seizures, heart inflammation, costochondritis, tachycardia, increased liver and kidney activity, Osteoarthritis, photo-sensitivity, muscle weakness, sporadic and severe nerve pain.
The Life I Lost
What is the life I lost?
Or perhaps I should say the path I never got to take and in turn a life I never had?
The biggest regret from all this that I look back upon?
Well, it doesn't really matter now, and as they say, you can't or shouldn't hold onto the past.
But if there are moments of your life that you are very proud of, I say keep those memories and hold onto them.
For me, it was my time in the United States Army ROTC program and my contracted years leading up to what was expected to be my commissioning as a 2nd Lieutenant and officer in the US Army.
But if your life took a different path, why hold onto those memories?
For me it's...
- The top physical and athletic shape of my life
- Coming completely outside my comfort zone doing things like rappelling, 10k Ruck Runs, marksmanship and weapons assembly, field training exercises from a GP Medium in 12 inches of snow, Airborne Infantry School
- I learned more about life, teamwork, discipline, and leadership in those 2 short years than possibly any other time in my life
- I wouldn't have the courage to take on challenges and risks to this day without those times
I am forever grateful for those times before the wolf within me started to truly reveal itself and ruin most things I attempted in life.
Also, there is part of me that writes this to chronicle some of the things I did in writing.
I've had so many people tell me directly or to others that I made it all up. There's no way I could have done those things because all they see is what I am now, what Lupus has destroyed and left behind, what the wolf chewed up and spit out.
I've had others brag to me about their physical fitness prowess from their neighborhood "boot camp" programs. Tell me how I should get in shape, tell me I should be like them, etc. Have them tell me that there is no way I could have ever have helped carry another cadet (who fractured his ankle) and his gear for 6 miles in the pouring rain during a Cadet Ranger Challenge at Fort Totten, NY, in 1991.
College & US Army ROTC
At the end of my freshman year of college, I received an Army ROTC flier in my student mailbox. I looked at it and placed it on my desk. As I thought more and more about it, I wanted to try a new challenge. I felt I was in reasonable physical shape.
Ever since my High School gym teacher gave us his infamous orientation speech, "do you want to go home on the yellow school bus and play water guns in the backyard with your friends? Or do you want to be a man and take up a varsity sport or at least weight training?"
Although backyard water guns were really fun, I did apply myself to weight training and exercise all 4 years of High School and into College. I would work Garden Center and Landscaping jobs in the summers so I was always lifting heavy bags of stone and moving pallets of mulch and moss.
So I figured I could handle the physical part. The photos of cadets climbing telephone pole obstacles about 3 stories high seemed intimidating to me, but I figured I could do it.
Little did I know the obstacle courses would be the easy part. Physical fitness would be the biggest challenge and ultimately an immense achievement.
My first Physical Training (PT) Class was of course the US Army Physical Fitness Test (APFT).
I think I scored a 45 out of 300. Never even finished the 2-mile run.
I was the laughing stock of the APFT scoreboard in dead last place. I think second to last was at 150.
My Sergeant and Colonel were already making comments that perhaps this wasn't for me, but enrollment in ROTC was low that year so they needed everybody they could get.
So I practiced, practiced, and practiced some more. I made sure to attend every PT class, even twice a day when offered. I would do push-ups and sit-ups all the time in my dorm room. I would run the track or play pick-up basketball after class in the evening. People thought me an idiot because I would run the full length of the basketball court to play defense every play.
Next monthly APFT I scored 120.
After that 170.
Then I maxed the pushups (82 in 2 minutes) and finished with a 248.
Then came Winter Break. Apparently, everyone else took a break. I exercised daily in the cold of January at this outdoor trail and exercise course by our town's police station.
When classes resumed in January I came back and scored a 292 by maxing the push-ups and sit-ups (93 in 2 minutes) coupled with running 2 miles in 12:58. I sailed past others on the scoreboard.
ROTC Ranger Challenges
Once I established myself in Physical Fitness, I was able to become an active member of our Ranger Challenge Team that competed against other colleges in our Brigade.
- APFT Test with tiebreaker points for exceeding maximums
- 6 Mile Ruck Run with 20lb. pack, Class C uniform with boots
- M-16 Marksmanship
- Weapons Assembly
- Grenade (dummy) Toss
- Rope Bridge
- Land Navigation Course
These were team events where a squad of us competed against other squads. And like all teams, we each had our members with certain strengths. I was proud to be a top performer among the APFT, 6 Mile Ruck Run, and Weapons Assembly.
For Weapons Assembly I would practice at the Newark Armory with my eyes closed to memorize the feel of the parts of the M-16 (the cotter pin was fun to feel for) and the M-60 (master twisting your arms to align the gas piston) and the test sequence to confirm the weapon was assembled properly.
For the APFT I actually scored my highest score ever given the tiebreakers. You could exceed the maximum limits in order to have a tiebreaker with another team. I remember my Colonel being amazed that I did 122 pushups in 2 minutes (so more than 1 a second) and 110 situps in 2 minutes. The award pictured is what I received for both that performance and for helping carry my teammate and his gear for almost 6 miles. And our team still finished in first place.
Sure people have done much better physical feats and under real situations. But for me, it was something amazing and also makes me wonder what if?
Picture of my wings and challenge coin. The wings on the right are the actual ones that were pounded into my chest by my Sergeants and Squad upon completion of my 5th jump.
Airborne Infantry School
In the summer of 1991 while taking summer session courses my Colonel asked if I would like to go to Airborne school. A slot had opened up and all the junior cadets (MS-IIIs) either had slots or could not go. So he was asking me as a sophomore (MS-II).
I trained every day leading up to the trip. I would run every evening using the slopes of the newly built parking garage. I would practice pull-ups from the exposed pieces of thin metal holding the concrete block in place. I would also run through town and up South Mountain to help my endurance.
- my top bunk mattress thrown on the floor by Sergeant, learn to use a coat hanger to make better hospital corners
- 50 pushups for my uniform looking like it was shot with a wrinkle gun, find an iron or the on-base dry cleaner
- 50 pushups for boots not spit-shined, take advantage of the guys on base the Sergeants introduced with the boot shining service
- 50 pushups for hair too long, ask the on-base barber who cuts your Sergeant's hair to cut yours like his
Then there was my running shoe. Since ROTC enrollment was low before the 1st Gulf War, Desert Storm, we did not have big formations to march or run in. Usually, there were like 15-30 of us at a time. Now I was running in a very tight formation within my Platoon of 200. I didn't stay in step while doing the morning run. My running show was stripped off my foot. This was met by mocking laughter all around. If you dropped out of the run for any reason, you would be recycled. So what choice did I have but to keep running? One running shoe and one foot in a sock only. I ran the remainder of the run this way. No clue where my sneaker went but determined to not drop out.
When we returned to the barracks yard, my sock had 2 massive holes on the bottom and I had some blisters of course. I asked if anyone saw my running shoe and I was told to report to Sergeant Airborne Thompson's office. I entered the office and Sergeant Airborne Thompson was flanked by 4 other Sergeants who were obviously smirking to not laugh. My running shoe was hanging from a nail on his wall behind his desk.
Sergeant Thompson said, "what are you doing in my office Airborne?"
"That's my sneaker on your wall Sergeant Airborne."
"No that's mine Airborne. I found it while we were running this morning. It looks good on my wall, doesn't it?"
I was at a loss for words on that one.
He continued, "Do you mean to tell me crazy that completed our run this morning without a running shoe?" They would call us "crazy" in lieu of verbal abuse.
"Clear, Sergeant Airborne. I fell out of step and lost it."
"Get in the front leaning rest position" is also known as the push up ready position. I believe he then did his best Sergeant monologue about the merits of wearing running shoes, learning how to March, and not being another ROTC Cadet-idiot or "Caditiot"
Then he handed me my running shoe, smirked at me, and said he never saw anyone complete the run like that before, others usually drop out. Then he harried me out saying I was late for formation.
It's All For The Best
It was soon after I returned from Airborne School that the warning signs of Lupus started to destroy everything and hammer me with unexplained fatigue. I would fall asleep in classes, watching movies, not be able to get up out of bed, miss classes, and my physical stamina and endurance plummeted. Problem was that no one and no Doctor could identify it for years to come. I was misdiagnosed multiple times. Told I was depressed, anxious, and I have IBD. I was given all sorts of pills and anti-depressants that did nothing other than seemingly make me more fatigued and depressed. For a period of time, I was given a new anti-depressant every 3 months to try. I ultimately quit school and ROTC (breaching my contract). I tried to tell my Major that I was diagnosed with Ulcerative Colitis (another misdiagnosis of Lupus inflammation) and Depression, but he was so annoyed about having to do the forms (muttering G-dammit every 2 minutes), he ignored me, wrote it up as that I simply quit, and told me how disappointed he was in me.
People around me all thought me a failure and quitter, as did I given I did not know the full breadth of what was happening to me. Of course all but one of my teammates and friends from ROTC abandoned me now the common bond over the Army was gone for me. That one friend was Mark Whitford. He remained my friend even after his graduation and commission. Mark would later go on to become a US Army Captain and hero of the Fire Department of New York on September 11, 2001.
No matter what, the path my life took is all for the best. As my wife and I say, it took all these moments in life to add up to a path where the two of us met and now have our wonderful daughter.
So please note that although I was briefly contracted to the US Army as an MS-III cadet, I was never in the Army. I am not a veteran, I am not someone you thank for their service, I am not a true "Paratrooper" (I am what was called a 5 jump chump or cherry), I never received a MOS and was never assigned anywhere. My longest stay on a military base was 3 weeks in 1991 at Fort Benning, GA, for Airborne Infantry School.
The Wolf Within Me
Lupus is currently not curable. My Rheumatologist uses the analogy that my immune system is a wild animal that we attempt to keep caged in remission with powerful and yet toxic medications. So of course given its “Lupus”, I associate a wolf as the wild animal within me. Frequently the caged wolf is still able to take a swipe at me from within the bars of a cage. And many times the wolf breaks free to wreak havoc on me until medications are increased or added to suppress it again. These events occur despite me taking all my medications daily as instructed. My wolf has its own plans for me it seems. And surprisingly enough, those plans may include me becoming a better person.
More "Life With Lupus" articles by this author...
- The Wolf Within Me
- When The Wolf Escapes
- Perhaps I'm A Better Man...Make That Wolfman?
- Everything Hurts
- Coping At Work
- Dealing With Doctors
- Home Remedies
- Relating To Others
- Online Community Review - BetterDays
- Vaccination Shot #1
- May Is Lupus Awareness Month
- The Patient And The Weather Website
And related articles by this author...
- Working With Serious Or Deadly Illness?
- Biggest Surprise Working With Serious Illness
- Lupus And Raynaud's Disease
- No One Gives A Fork How Many Spoons I Have
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