Mefloquine Stories: Dana Lee

Married to Mefloquine

This Mefloquine Story comes from a Facebook post by Dana Lee Draper, who is the wife of someone with quinism. This is something I have wanted to do for a very long time, because it is also important that the stories of the spouses be heard. The reason there hasn’t been one up until now is because I don’t think that I would be able to write a wife’s story and give it proper justice. It would require writing with a nuance that only a woman could really truly capture.

Who else feels like this? Sorry in advance…this is very long.

Almost 16 years ago I met my loving husband.

We were both separated with kids in tow, not an ideal start.

We both knew what we wanted in a partner and we were genuinely friends and respected each other.

I had found my partner for life. Smart, caring, a bit shy, strong and energetic. He loved being with the kids and me. He taught martial arts in his spare time at night and he was fit and healthy. I definitely felt safe in his arms.

You didn’t need to be a psychic to see that this guy had been through some stuff though. He served in many missions overseas in terrible war zones and of course was suffering with undiagnosed PTSD.

Being in a military town you just know things…you know that they have been in the mud, the blood and the gore. He didn’t need to tell me anything for me to see that he served his country to his full capabilities. He was a part of the elite military force that our country is so proud of. His busted knee, broken sternum and cracked ribs spoke for themselves. He battered himself for our democracy.

Knowing better, I didn’t pry to find out more, didn’t ask questions that I knew he could not answer. He was mine and we made plans.

We moved in together. I finished college and landed a good job.

We planned to have a family – together. So we did! Enter our third child; who is now 13. Our older children are now young adults and are living on their own.

One day, when I was pregnant he came home from work and was done…didn’t want to go back. They wanted to send him overseas again…he was not having it. He knew that if he went back he would be dead. Would not be lucky this time and he didn’t want to go.

As I was able to support us, he put in his release. I didn’t care if he became a Wal-Mart greeter; I just wanted him with us safely at home; together. It took a year but we were out of the army life.

We opened businesses together that we could work at together. They flourished. I managed all the details for the businesses and he used his skills to make them successful.

We planned to travel and we did. We went to many beach destinations and he participated in it all.

We planned to grow old together.

The whole time he was having some residual issues from his military service. He didn’t sleep well, experienced terrible nightmares, cold sweats, tinnitus, always sleeping in the prone, sometimes eyes open. I though ok, this guy definitely has PTSD, in a big way but that is ok. VAC is better now and has lots of programs for Vets.

We sought out help for this. He attended “therapy” for his newly diagnosed PTSD and Major Depressive Disorder. Of course this was very difficult and the practitioners did what they felt they needed to do and delved deep into his “traumas”. It was a nightmare. During this time, his worker then was reassigned to another area; so now he has no one to talk to.

He could no longer work with his trauma therapist who was dealing with his deep traumas. During a session, while he was recounting a trauma he opened his eyes to see this therapist in tears. That traumatized him even more, knowing that he was hurting someone with these memories.

In 2013 he crashed. He left. He was sure that we would be better off with out him and his problems. I was stunned, in denial and trying to understand what they hell just happened. My husband had never raged before, he always kept it inside. I believe his years of martial arts training allowed him to have this control, but I really didn’t recognize the person in front of me.

I kept reaching out to his case manager but I was getting nowhere, I was not her client. I don’t want to trash his case manager but it was not a good situation. I knew he was crashing and burning while at the same time he was being told by the case manager that he looked well and to keep doing what he was doing. WTF!!

Months later, with so much drama under the bridge; something was said to him during a meeting that woke him up. I am not sure what it was and at this moment he does not remember what it was but he was back home. I was not turning him away!

The months in between were Hell….H.E.L.L. for myself and our kids. I knew he was not well, I though it was only PTSD at that time.

We made sure that we were both going to do this again, TOGETHER.

He loves me and I love him, we will get the therapy needed and he will be ok.

We start to notice nagging headaches, problems with his “hearing”, and he always seems to be in pain. He is starting to forget things…simple things.

He was diagnosed with Tinnitus. Seems reasonable considering what he did with explosives and weapons. We put in a claim for this injury. VAC agrees he has tinnitus but his hearing is fine. It is denied. So we moved on.

He is diagnosed with Auditory Processing Disorder. We are thinking again, that this is due to his using large caliber weapons, had many explosions in close proximity to him amongst other things and perhaps this has caused the damage. So of course we put in a claim to get some help.

No surprise, the claim is denied…VA agrees he has it but it is unrelated to his military service! So we pay for the necessary testing, purchase some specialized glasses from the Neuro-Optometrist and try to get on with our lives.

A couple years passed with him coasting along reliving his traumas and nightmares every night. Now he is also experiencing numbness in his left arm, his memory is shot, migraines that last weeks and never really go away. He is unable to be in a crowd of any size, conversation with more than one person is impossible and he is fatigued. He has newly acquired hearing aids, which the VA shockingly paid for, even though they denied his tinnitus claim and APD claim. He is still depressed, not suicidal but definitely tired of the constant fight.

So we first sell a successful martial arts school thinking that we need to slow down and give him time to heal. Maybe he just needs to slow down.

We start to reduce his schedule at our second business, as he can no longer cope with the people and the pace. Just slowing down does not seem to be enough.

We start seeing posts on social media from fellow soldiers that he served with. So many similarities of how people are feeling physically and emotionally. With so many people being on different missions how can they all be feeling the same way…clearly this is not just PTSD.

ENTER MEFLOQUINE to my marriage and my life.

It all makes sense. This is of course PTSD but that is not only it. This medication that they were forced to take in massive doses, to serve our country has affected his brain…his BRAIN!

How the hell do we fight this…there is no therapy that we are aware of, there is no magic pill, there is no amount of vitamins that will cure this. We are now battling for survival.

Our government, who he swore to serve to the best of his ability for our great nation called Canada, has forced him to take a medication that has effectively disabled him and we have no recourse.

On top of everything else he is feeling, he is now having Neurological issues, dizziness, weakness, light sensitivity in stores like Wal-Mart with fluorescent lights, debilitating migraines, terrible memory, unable to finish sentences, forgets words mid sentence, looses his train of though easily. His feet are freezing and his hands are cold, or the other way around; sometimes just one hand is warm and the other is cold! Regardless I knit him some socks to wear to bed so I can still be close to him.

Due to the dizziness he is also nauseated…he very rarely eats a full meal. He is losing weight. I feel like I could understand a spouse of someone whose partner is having Chemo. There is nothing that you can do to make them want to eat when they feel so ill…so another pound lighter this week for him, another pound on for me due to stress.

He is completely unable to be in crowded room. Not because of the people necessarily, but because his brain feels like it is short circuiting from all the information and stimulation…it is like his internal wiring is not right…and I am helpless.

All I can do is move him to another room, leave the situation altogether, and isolate him.

It takes him a while to come back to me…to regain his composure and come back to his “new normal”. This “new normal” is on a sliding scale; what is good on one particular day won’t work on another day. The episodes seem to be getting worse so we have to rethink our social life and how we see people.

We don’t go to group functions; we don’t spend much time in groups with multiple conversations. We tend to just be together where he is safe and comfortable.

Other veterans, friends and relatives will often say to him, that they completely understand how he feels, but they don’t. They are able to have conversations with more that one person at a time, they can be in groups, they can remember words and don’t fall over because they are dizzy. So they don’t understand at all, but they wonder why we don’t come out, why we don’t stay long if we do go out. It is painful.

We are soon going to be seeing a Neurologist and a Neuropsychologist. We are hoping for good news but we are realistic and know that this will probably not be good.

We are grateful to have a wonderful VAC worker now, she has been a rock and is always there for us, no matter how many questions we ask.

She has since moved him onto D.E.C. Benefits, which is a great help and has given him the ability to take some time off of work at our business.

We are grateful.

We are grateful for the caring Psychologist that we have and her team of Neuro feedback specialists that are trying to unlock this mystery to help him regain “normal” function. He is the first one at their clinic to present with this Mefloquine injury and they are delving deep to figure this out. One thing we know for sure, this is a marathon and not a sprint, and we are reminded of that often.

We are currently getting ready to sell our Harleys…his trike and my bike. Both beautiful machines meant to be on the open road, enjoying the freedom of the wind and scenery. He has a trike due to a military injury to his knee but now just turning his head to do a quick shoulder check causes dizziness, rides cannot be long due to his exhaustion and it takes days to recover. Our daughter loved to ride with her dad but she understands out decision. So we will travel still but now, not by bike. We will re-evaluate the “new normal” again.

He needs me to be with him for many different reasons. First and foremost he wants to be able to spend time together doing things with each other while he can do it and remember doing it.

It is heartbreaking.

Of course I would love to, but remember four pages ago, I have a full time job which provides a steady paycheck and credit at the bank…banks don’t like self employed people. I am supposed to work until I am ready for retirement. That’s what people do when they have good jobs.

We have talked at length about me quitting my job and no longer working. Maybe I change positions from full-time to part-time? We applied for the caregivers benefit due to the amount of work I have to do to keep him going and to keep him as healthy as I can; but we were denied. The system is not set up to give a benefit for a brain injury, a missing arm or leg definitely, but not a brain injury from Mefloquine.

They will however give me respite care…a stranger, or someone I know will provide me with 4 hours a week of care so I can have a break…. they will pay someone else but not pay the spouse.

They will pay for Meals on Wheels for him twice a week so he does not have to try to figure out what to make if I am not at home for dinner. Of course this is as I said above, just for him.

OK, sure, why not. Bring it on, any help is helpful.

Our youngest daughter sees the changes in him…she knows something is up, she is a smart girl. She knows that he has some good days and bad days…she sees the forgetfulness, the dizziness, the struggle mid sentence to find the words needed to finish a statement. We are now setting up counseling for her, she will need to get through this too.

Counseling is also offered for me. I will take them up on that too…any little bit of help is good.

We are now looking ahead….to the future…what will that look like? Time to re-evaluate the “new normal” again?

Although his pension benefits will transfer to me in the event of his death, he is young still…and 8 years younger than me. We used to joke that I got a young husband to push me out into the sunshine when I became too old. I don’t believe that this will happen anymore.

I am now preparing myself to be alone when I am older. Alone because in all reality my husband will be in a long-term care facility long before he should be due to his being given massive doses of Mefloquine. Doses, which he took under orders and being a dutiful elite soldier he didn’t disobey orders. I wish that he had been more rebellious and just spit them out, but he didn’t.

So I will be alone. I am not after his pension … but this is reality and I won’t have his pension income to rely on because long-term care is EXPENSIVE. He will need specialized care. He won’t be alone in there. I hope I am not the only one thinking about this stuff…we need to prepare for the worst.

I need to work for my pension so I have something to rely on when I can no longer take care of him. Retiring is not an option for me. I will buy another lottery ticket, maybe we will win and I won’t have to worry about this anymore.

We are both afraid of what the future will hold. We don’t really talk about this too much, it is too painful. We make plans to go to Europe soon to see some history together while we still can.

So we go day by day. We reaffirm our love for each other daily; he is still my rock, my best friend.

Our days are still busy, but the content is different than most “normal” marriages. The finances fall onto me. Homework with our daughter is my area. I make the lists for grocery shopping and meals that he likely won’t be able to eat. If the grocery store is too busy we put it off until there are not so many people, mostly later at night.

His medical marijuana is made into edibles, bath bombs, massage lotions and creams. I am always on the lookout for something new that we have not tried. I am getting pretty handy with a recipe.

When he forgets what he is about to do, I gently remind him. When he loses his balance at the grocery store because of the people and lighting I am there to prop him up until the dizziness subsides. I wait patiently for him to remember what he was just about to tell me before the words escaped from the tip of his tongue.

I got him a new buddy, an adorable Frenchie that has made him laugh again at his silliness and who just loves him as he is. He also gives me some relief, because I know he won’t run himself into oncoming traffic with his buddy in the car with him. He is not suicidal but I like knowing that the dog is with him, always.

This is definitely not what a “normal” marriage is like, is it?

We hope that there is a plan somewhere that someone has taken the time to really look at this drug and what it has done to people. Not just military people, RCMP and civilians too; so many people affected.

We hope that there are some really smart doctors and scientists that are developing some medical process that will help him and others like him.

We hope to be heard! We need to be heard and acknowledged. This is our reality…it is difficult.

We are willing to do anything to get him better. I am constantly looking at new medical practices, new vitamins, new medications. Some are crazy ideas like bariatric chambers and psychic healing. Did I mention we are willing to do ANYTHING!!

For now we wait for Western Medicine to come up with a miracle drug to fix this problem and our Government to acknowledge the damage that has been done.

And we re-evaluate our “New Normal” again.

Dana Lee Draper

July 2019