If you've chosen to read this blog post, then I'm guessing you are a bit curious about what you may have done "right" or "wrong" in your interactions with me. Let me just say this...we ALL do things that hurt people! And many times, the "hurt" is something felt by the recipient that was not at all intended.
The point of this post is not to make anyone feel guilty. Instead, I hope to bring about a better understanding of what those with MCS or toxic mold or difficult health problems or life situations may be going through. I also hope to convey how some of us may react to certain interactions, largely based on how our current experience is affecting us.
As my hubby and I often do nowadays, I want to communicate what my heart is feeling, so that your heart can connect and understand better what I'm feeling. I believe this heart connection helps us to be more compassionate and thoughtful in our interactions with others.
Growing in compassion benefits everyone and makes this world a better place. With that introduction, thank you for exploring this subject with me.
Things That Hurt
Hurt #1. When you talk before you listen. I mean, REALLY listen.
Living with MCS and the effects of toxic mold puts an enormous, many times unbearable, burden on individuals. The stress level is something that cannot be described. These days, I function constantly at a “tipping point”. I have had such a load of stress for so long that one additional stressor can often “topple” me.
On days when I am feeling fairly good, I have some energy to deal with the stress of interactions with people. On days like today, I don’t.
Here’s the situation. I’m living in the back of a pickup truck that has an aluminum topper, parked on an RV lot near the ocean. On my lot in the back of my pickup truck is my safe home. I have very few items in my home, because many items commonly used for everyday life have offgassing chemicals that upset my body’s fragile system.
It is three-fourths of a mile for me to go to the bathroom and back. At first I walked, then life got easier when I got a bike to ride there.
Unfortunately, because of my EFA deficiency (in addition to EAA deficiency, perhaps brought on by fighting off the mold), I began having to use the bathroom much more than normal, due to confusion in my nervous system. I often couldn’t make it to the bathroom in time, though I went many times a day.
As my EFA deficiency progressed, my body became entirely depleted. I couldn’t get out of bed. Once I figured out the problem, I immediately began treatment with chia seed, and felt relief. But it takes time to fully recover.
Since I didn’t have energy to walk around my site, much less ride my bike to the bathroom, I unplugged my truck’s electric and got my truck home prepared for transport. (This is more complicated than it sounds, and I prefer to not drive the truck if possible.) I drove it to a beach and parked near a bathroom. This worked great, but with no WiFi or electric, there is only so much I can do, for a limited time, and then I need to find a new location to “plug in”.
Today, it was rather cold. I knew if I parked my truck at the beach, I might not be warm enough, since I couldn’t plug in my heater (this is how I stay warm at night). I dreaded the thought of driving my truck every time I had to go to the bathroom. I didn’t have the energy to ride my bike. I didn’t even have the energy to figure out what the heck I was supposed to do to make it through the day.
I asked for help online. I shared my needs. I was extremely specific.
Some of the responses I got stressed me out so much I deleted my post.
What happened? I believe those answering wanted to help, and I am grateful for their honest desire to do so. They didn’t have to reply to my post, so I must stress that I appreciate them doing so.
The problem was, some responders didn’t "listen" fully first. In our fast-paced world, it is easy to do. We catch some of what a person says, and our mind immediately jumps to respond before we actually hear everything being shared.
In my fragile state, I could not handle the additional stress of having to explain myself two and three times, something I had already shared in my original post.
It occurred to me that I’ve done the same thing to people many times over. And I had no idea how hurtful and stressful it could be. Now I know.
Hurt #2. When you offer a quick fix for something that is not so simple.
In the example above, I shared how I needed a bucket to put in my truck as a port a potty, that didn’t have plastic or offgassing chemicals.
Four of the replies were pictures of some type of plastic bucket.
I do appreciate the desire of these people to offer an easy solution. For most people, indeed, a plastic bucket of some sort used as a port a potty would be a great, easy solution. Unfortunately, it is not for me.
It’s hard to explain the hurt of already being in a stressful place, desperate enough to ask for help, and then receive multiple replies that feel like salt being rubbed in the wound.
I understand that was surely not their intent.
But with MCS and post-toxic mold circumstances, things are complicated. And because of this extreme complication of loss of every material possession, loss of health, loss of safety, and loss of social connection, the weight of being misunderstood and minimized is somehow traumatic.
I get that people will not understand the depth and gravity of my situation unless they themselves have experienced it. And I cannot explain it to every person who offers me a trite solution about something. They still won’t get it.
What hurts is that because they don’t get it, I somehow feel an implied guilt (probably put on myself) that I am making a mountain out of a molehill. The truth is, because of MCS, that is the reality. Every molehill becomes a mountain.
Other people can just rent a new apartment. I live in a pickup truck because no apartment or house in Florida (where my husband has a job) can be safe for me, with my extreme chemical and mold sensitivities.
So yes, things are a bit more complicated than what you can see. I am not “high maintenance” or “spoiled”. I’ve gone through and am still in the greatest devastation of my life. I hate how my special needs complicate life as much as you do. I wouldn’t ask for these special considerations just for fun.
When I say I’m looking for a non-plastic bucket to pee in, it’s because I really do need a non-plastic bucket to pee in.
Hurt #3. When you tell me to cheer up and look on the bright side.
As mentioned above, I’m in the midst of the greatest devastation of my life. I’ve broken down weeping more days than not. I’ve dreamed about committing suicide, because the circumstances surrounding toxic mold and MCS feel many times like no life at all, and on those days I would have preferred death than endless days of horrific, inescapable misery.
The only way I have survived without going crazy has been living in gratitude, looking around for anything I could say thanks for, counting my blessings, seeing my life from a different perspective. My other salvation has been faith. Faith that good things will come out of this trial; faith that the One who holds my tomorrow knows what He is doing.
But to live in honesty and not go crazy or use some foul addiction to mask my pain, I’ve got to express what I’m feeling from time to time.
And on those occasions, when you tell me to look on the bright side, I honestly want to bust my fist through your head. (Whoa; did I just say that?)
I know that punching people is not a kind, compassionate, or helpful thing to do, so instead, I take a deep breath and remind myself that you are only trying to be helpful. Yes, I do need to look on the bright side; I do need to count my blessings. Thank you for the reminder.
For this moment, though, my truth is, that I’ve got to grieve. I’ve got to grieve the loss of so many possessions I held dear, things like my guitar that I used to make music and sing uplifting songs and bless others. Things like my camera that I used to make fun music videos to encourage others and bring a smile to my face. Things like a safe, cozy apartment to come home to and relax with a movie when life is stressful. Things like a comfortable bed, or the freedom to do something other than deal with pain and loss and figuring out how I’m going to get to the bathroom.
There is some major pain in my life. Please respect my need to cry and seek out some encouragement and prayer from others from time to time.
Hurt #4. When you continually give me advice I am not seeking.
I understand how much it stinks to have people constantly complaining. My instinctive reaction in these situations is to help that person find a solution instead of living in the problem. I get that.
Part of my therapy is to talk publicly about my situation and solutions. I found help to deal with these horrible circumstances by reading blogs and articles online. I am so grateful for those who have shared their stories and their tips. I feel that sharing my own experience is the gift I can give in return; “paying it forward”.
As I talk about my MCS experience, I am constantly getting advice from people. I understand that I am putting myself in a position where people want to help. I have been greatly helped by the advice I’ve gotten in response to my sharing. I thank you for sharing helpful wisdom and experience with me.
But honestly, sometimes I just want to share what I’m going through and have you listen. I don’t want advice. Nobody likes people always telling them what to do. We want compassion; we want to be truly heard; we want your presence and empathy.
I like to focus on positive and funny experiences. Laughter and joy really keep me going. So sometimes I just want to share that when I’m biking to the bathroom, I think it’s funny that I get stuck behind slow cars in this elderly neighborhood (usually it’s the car being stuck behind a bike, you know?) I am not looking for you to tell me I need to invest in a port a potty or pee outside. Please…just laugh with me.
Hurt #5. When you talk about me “through the grapevine”, instead of just coming to me.
I love when people come to me and ask me questions. Many people seem intimidated to ask about my respirator mask, but I am so glad when someone asks a question instead of just staring or avoiding me!
I recently talked with someone in my neighborhood who related to me his compassion for my situation. He’d heard a story of me being basically at death’s door and waiting on an RV constructed with special filters so that I can breathe. Though we are waiting on an aluminum RV (no special filters) and I do have a lot of health problems, I’m not quite dead yet. The experience was pretty funny actually, how stories evolve as they pass through the grapevine.
Unfortunately, some not-so-positive things can get circulated as well, and that is happening to me. There are those in the community who shun me and make it known that they do not approve of me camping in a truck in their neighborhood.
Although I’ve learned that you can’t please everyone or make everyone like you, this does sadden me. I am praying for opportunities to interact with these people. I think if we actually had a heart-to-heart conversation, and they could hear the full story and get their comments and objections addressed, we could reach a place of understanding. I am open and ready for that, and watching for an open door.
Until that day comes, well, gossiping about me is not going to help anyone. We could be friends. I’m ready to be your friend.
Things That Heal
Healer #1. When you compassionately ask me questions and want to hear my story.
I absolutely love when you are interested in my situation, in why I am wearing a mask, and you want to get to know me. I love when you listen and cry with me, and tell me “I don’t know what to say.” I love when you weep with me, because it is a pretty crappy situation, and having your shoulder to rest my head on somehow makes it just a little better. And just the fact that you are showing me love brings a smile to my face and uplifts my heart.
Healer #2. When you tell me you are willing to help in any way possible, and when I take the risk to ask for help, you follow through.
This blesses me beyond belief, to know that you care and want to help. Mostly, people can’t help. They can’t find me a safe place to live, they can’t give me clothes or possessions…they really don’t know what will or won’t work for my sensitivities (most things won’t). I’m really a special needs case. But I will always tell you that you can pray for me, for provision and for safety.
Then there are times when I really could use a hand. I’ve been so blessed by those who have let me use their WiFi, kept my ice packs in the freezer overnight, helped me fix my broken heater, or let me use their bike to get to the bathroom.
It is so good to know that in my moment of need, there are people I can call on for help.
Healer #3. When you ask how you can pray for me, and remind me that you are praying for me.
This is so great, because often my needs are just for the strength to get through the day. I love it when people ask my prayer requests. I love being able to share where I am emotionally and ask for prayer for a very specific situation...things I won’t be sharing with the world.
Thank you so much for lifting me up to the One who does understand exactly what I need and is able to provide in His perfect time and place.
Healer #4. When you stand up for me when I am too sick to stand up for myself.
As I mentioned, I’m weak…in every way. I’m physically, emotionally, and financially drained. Thankfully, I can now stay in my truck as needed, to recuperate. But there are always interactions on the internet. The great thing about the internet is that I can come back to the conversation on another day when I have the strength to do so.
I absolutely love it when, in the meantime, someone who understands my situation has gone ahead and “stood in the gap” for me…answered the questions to their best understanding or defended me, in the case that someone has not been very nice.
It is also an indescribable blessing when someone “sticks their neck out” for me. I’ve recently had someone in my neighborhood who has rallied people together to support me, despite no small opposition. I cannot put into words how his compassion and advocacy has blessed my life. Mostly I just cry about it.
Healer #5. When you smile at me, say hi, and let me know you are glad I am on this earth.
There are so many people in my new neighborhood who have blessed me and given me just a little more strength to face the day, simply by smiling and waving. I am so socially isolated when I wear my mask. Even if I smile, people often look away because they are uncomfortable.
Having a whole community of smiling, supportive people who actually interact with me, has blessed me beyond measure. I cry when I think of what a change this has brought to my life.
One fellow asked me to share my sign language gift with the neighborhood church. It had saddened me so much when my former church home felt my mask was too distracting to stand in front of the church and interpret any more. I understand why they did it; it is indeed distracting. But I cannot tell you how blessed I was that this fellow in my new church home asked me to interpret, mask and all.
It is such a blessing to be able to give to the world, and have people who are open enough to receive my gifts, my smile, my service, my company…mask and all.
Healer #6. When you share about your own similar pain and struggles, so I can be reminded that I am not alone in my struggling, help me get out of myself, and help me keep things in perspective.
I’ve loved interactions with people lately where I ask them about themselves. Somehow, after hearing about the reasons for me wearing a mask, they feel a heart connection. I love it when they share something difficult they are going through as well. One lady shared with me about her recent Lupus diagnosis, another fellow shared about the breathing mask he has to wear at night, another lady shared about almost dying of a virus she caught on a cruise, and her husband dying within months of that.
Although we may not share the same experiences, I believe we share in common pain and heartache. To connect with someone else’s pain and hurt helps me reach out and touch another human soul. It helps me feel companionship in this life journey that, yes, involves seasons of pain.
And whether my pain and suffering is "greater" or "less than" yours, I don’t think is something to be measured. Some people feel like their pain is nothing compared to mine, and they shouldn’t even mention their trial in my presence. Nonsense. Your husband’s unemployment, your allergies, your marital and family struggles…those are your pain. Your current experience is just as valid as mine.
I so appreciate the opportunity to listen to your heart and feel what you are going through. It helps me to be of service, to be the listening ear, the shoulder to cry on, the one who lifts you up in prayer.
Last but not least, if you’ve actually made it to the bottom of this very long blog post, THANK YOU. Thank you for taking the time to understand my experience. Thank you for wanting to learn how to better relate to me. Thank you for understanding that we all make mistakes, we all hurt people, and there’s nothing wrong with that. We are human. What I appreciate is that you are seeking to learn and grow and improve in your relationship with others. I am doing the same.