Updated: Mar 7
Dear Friend, As a wife, mom, and a ministry leader I can't help but reflect on 2020 and all it brought. None of us saw "COVID-19" coming. Most of us had our plans and goals and were ready to move forward with all we had in our minds and hearts 2020. It took time for the weight of what was happening to really sink-in for me. Maybe for you too? I was busy trying to figure out how our nonprofit team was going to "work remotely" and still conduct the business of a local Habitat for Humanity. I was learning how to help my then 13 year old on how to "Cyber-Learn" and all in the middle of the two largest projects ever in the history of the organization. Working from home always sounded like such a luxury to me! Now I was doing it, it's not all it's cracked up to be. Business as usual was gone as I knew it. I wasn't afraid or even worried, I was determined. To keep everyone working and paid, to keep the projects moving forward, to tackle the "at home" challenges and to help my straight A son be successful at home. I thought my biggest personal challenge would be the cancelled speaking events and not being able to see and hug people. Otherwise, I thought I’d be fine. I mean after all, how long can this really last? For the most part we stayed home unless we had to go out. Except the for occasional let's just take a drive because the walls of this house are starting to close in! We wore masks, we followed the directional signs at the grocery store, we maintained 6 feet of physical distance and any other rules tossed as us during those early days, when none of us knew how to act in a pandemic. I found myself in prayer A LOT! Work for my husband continued on, uninterrupted and unchanged, except he had to have his temp taken and wear masks into every business he went to. I also found myself in an effort to keep the Board of Directors and our employees informed, and safe watching Every. Single. Press. Conference. from the Governor, President and WHO. This pandemic was out of control and things evolved so quickly. The only control I had was to care for those around me the best I knew how by keeping positive and informed. I didn’t see it then, but I was neglecting me, big time. I held it together pretty well.... I think! My team was doing really well and we were hiring when others had to layoff their workers. We were making great use of the time to update policies, procedures, set goals, create new ways to connect and communicate and the list goes on and on. We applied for and got the PPP funds from the Cares Act Funding. This helped with some of the financial burdens we faced while the individual monetary donations almost stopped completely. Finally in early May 2020, Pennsylvania's Governor, Tom Wolf reclassified some construction work as essential. As long as we followed some safety precautions, we could go back to work on the jobsite. This was a partial win for us. Friends, we had families waiting for their Habitat homes so this ability to return to the construction site was a really big deal for us. We were grateful. But like all of you, we waited out the Red-Yellow-Green ( whatever it was in your state) phases of the pandemic. We’ve seen those around us suffer. We know people who've lost their jobs because of COVID-19 and didn’t get UC for 12 or more weeks.
We saw those who were exhausted because they were essential workers and were pulling 6-7 day work weeks with 12-14 hour or more a day slowly lose hope of this pandemic ending. We know people who died because of COVID-19. We know Mom's who had to quit their jobs because daycares were closed.
COVID was/is controversial. Some said it was a conspiracy, some thought it was God's judgment, others just saw it as a rogue virus trying to decimate humankind, or at least those who weren't 100% healthy. The views were varied for sure, but the pandemic affected us all.
Toilet paper was like GOLD, people were short-tempered and some were just plain nasty in the stores, probably because they were afraid and life was anything but normal or easy. Let’s face it, even for folks who didn’t lose a job, a loved one or have any other catastrophic thing happen, COVID-19 was hard for them too. Responses of stress, impatience, uncertainty, frustration and even anger were commonly seen. Road rage was at an all-time high, domestic violence, substance abuse and suicidality were "in our face can’t ignore" issues. Some did anyway.
Then we all saw the horrible tragedy and abuse of power of George Floyd resulting in his death. This further divided our nation, some insisting racism doesn't exist, some insisting all white's should feel bad for the privilege they have for being white. This knee to the neck atrocity brought real issues affecting our brown and black neighbors to light that should've been dealt with as a society long time ago. Kobe dies, Fire rages on the West Coast, RGB dies, Beirut explosions and the list seems never ending. 2020 was overwhelming enough, right? Did I mention, I prayed A LOT???
Memorial Day weekend of 2020, a rare brain disease I was diagnosed with back in 2009 came out of remission and came back with a vengeance. To say I was stunned is an understatement. I didn't even know it could go away and come back.
During a church service in late 2011/Early 2012, I went to the altar after the guest speaker spoke of someone with nerve issues in the neck or brain was going to be healed. This was me! I had no doubts this was for me and trust me when I say, I didn't run to the altar often.
Hands on me, anointed with oil, a prayer of declaration and faith was said, I agreed, I believed I was healed. Wouldn't you if the pain left and was gone for 7 years? Yup, not a far fetched assumption. Unless that is you don't understand the disease your afflicted with. Which I did not, not really. But that doesn't mean God didn't intervene at that time. I believe he did. After all, I WAS pain-free for 7 years!
I learned that the disease had progressed significantly while in remission. This time, it was not responding to anti-seizure meds like it had before it went into hiding for 7 years. I was determined to beat this too, but too be honest,
I entered the battle exhausted.
While, I am grateful that I was/am surrounded by such a great cloud of witnesses, in the both here and hereafter but I still had to go through IT. Battles are rarely ever fought alone. Even the ones we take to the Lord, Jesus is always interceding for us. So again, never alone! But it doesn’t always feel that way does it? I learned a long time ago that feelings are indicators of what we believe and are experiencing but they are not the TRUTH. Jesus is!
I found myself during the attacks, singing sometimes in a whimper, through the pain and the tears, and gasps for air, as the pain knocked the wind out of me. It was the only way I knew to NOT LOSE HOPE. I was devastated. I couldn’t even take care of my family properly. Every. Thing. I hung onto as “normal” was now gone too! What COVID didn’t take, if you will this disease I was afflicted with did. Talk about being stripped of normal. The only thing it didn't take but made stronger, was FAITH.
To give a tiny bit of perspective on these disease(s), the 5th and 9th cranial nerves in my brain have lost their protective (myelin sheath) covering, and because of that when a vein, vessel or artery bumps, entangles, pulses against it or sticks to it, it sends a signal to the brain to attack the face, tongue, throat, etc. The pain has been likened to being burned, stabbed and electrocuted all at the same time.
These are accurate depictions. The events that trigger these attacks as they are known, are different for everyone but for me, over time it became almost everything. Bending, lifting, semi-brisk walking, vacuuming, talking, chewing, wind, cold, stress, tension in my muscles, laying in the wrong position, loud noises, flashing or bright lights, etc. You get the point.
In early June I might have 2-3 attacks per day, but by the time September rolled around I was topping off at 15+ attacks per day. While at work, I would often be found in the family restroom at our soon to open retail store. I’d go in and sit on the floor, writhe in pain, sing songs of praise to the Lord, declare who he is, what he has done, etc,
During all of this, I continued to try to live my life as normally as possible making adjustments as I could. A grocery shopping trip that would take 30 minutes before could take 1.5 hours if I could walk slow enough. Wearing the mask also triggered attacks. So finally I made an adjustment out of sheer need. I began using Uber Eats and Doordash A LOT. Thousands of dollars over a 9 month period if I had to guess. You see I never really KNEW when the attacks would hit. While driving, I'd pull over. While showering, the shower would end. Cooking even became all but impossible. It disrupted and wedged it's tormenting way into every. area. of. my. life. no exceptions. As I mentioned earlier, during this time we were preparing to open the store and dedicate at least 3 of the 14 homes on our Revitalization Project. A lot was going on. I had to rely on my team in ways I never thought I would. They all did a great job, helping to bring us to the finish line of the store opening, getting homes finished, along with some faithful volunteers. But I felt like a failure in so many respects.
Was I doing amazing for someone dealing with all of this and contending with a rare brain disease that could kill me? By anyones standards, I think so. But that didn't satisfy me. I wanted Victory. I wanted Deliverance. I wanted Healing. On social media, I told everyone I was friends with what I was going through, I wanted them to see how God sustains us during the trials.
By October, after our Grand Opening and, it was clear that the Gamma Knife Radiation Surgery I had in July 2020, failed. If anything it made everything so much worse. I was off of work for almost a month during this time. That period of time is a story in itself and someday I'll tell it!
Even during all of the pain, I found something fun IN sharing pictures, like the one below. Not everyone shared my enthusiasm, including my boss. This is the frame they attached to my head with 4 bolts/pins.
Once I realized the procedure from July didn't work, I seriously considered and talked with my husband, closest friends and business mentors about whether or not I would be able to continue on as the Executive Director.
I asked God to guide me in this decision. To my surprise, God did not give me permission to leave my post. Don't get me wrong, it wasn't that I wanted to leave. It was that it was so painful having 15+ attacks of Trigeminal and Glossopharyngeal Neuralgia per day, I didn't see how I could stay. It wasn't fair to the staff or our donors, if I couldn't carry out the full load of my duties. You see a short term issue that could be resolved is one thing. But I didn't see a resolution, short of a miracle from God. I didn’t see a way forward. I was hanging on for dear life to the ways I saw him reveal himself to me. These glimpses made all the difference.
However, the enemy was also quick and unrelenting in his efforts to plant seeds of death. Thoughts of suicide would run through my head in the wee hours of the night or during my first waking moments. Of course I would rebuke them with the word of God, but they were there. I was like King Jehosaphat in that I was toast if God didn’t show up for me in this battle. He always has. I had no reason to doubt he would, in his way.
Friends, if you have never heard of these diseases, I'm so glad. They are known as the most painful affliction known to man. Also coined as the "Suicide Disease" because 25% of people afflicted commit and complete suicide because they cannot stand the suffering any longer. There is no cure, short of a miracle from God, only treatments that usually stop working overtime. The outlook is bleak for sure.
BUT GOD HEALED ME IN 2012, RIGHT? I had so many questions and little answers. All therapies exhausted, and on enough anti-seizure meds for three grown men, I was forced in late November of 2020, to make the tough decision to have open brain surgery (MVD) to treat this disease. I took a short temporary medical leave of absence from work and traveled with my husband to the West Coast. I was not looking forward to the flight. How would these disease respond to the cabin pressure and altitude. It was not a pleasant flight.
The surgery took place on January 11, 2021 at Stanford University Hospital in Palo Alto California. We arrived to California on the 6th, for my pre-op testing, but we had some free time, so also enjoyed some of the sights of the West Coast. We visited San Francisco, Pacific Coast Highway (PKH) and Pebble Beach's 17 mile drive. 17 miles was definitely our favorite. The beauty of the West Coast was awe-inspiring to me and if it wasn’t so expensive to live there, I might just try to convince Shawn to pack us up and move there.
Friends, I’ll never forget how the “Lone Cypress” at 17 mile drive made me feel the first time I saw it. I could relate to this tree in some ways. Stunning beauty on a cliff side, wind battering, waves crashing, sun beating down, mountain range in the distance. It takes my breath away just thinking about it.
Maybe it's all of these things combined that make this tree so stunning. Really, would this tree be so amazing it it DIDN'T have all of these things? Probably not! It surely wouldn't have taken my breath away. I might not of even seen it.
If you have never been to Pebble Beach's 17 Mile Drive, please put it on the must go list!
I became curious about this tree and wondered if it had any bibilcal history, so I checked. WOW, did you know the Ark, Noah's Ark, that God told Noah to build was from Cypress Trees? Pretty incredible that at the moment I was focusing on the loneliness, separation and exposure of this tree, it was also the STRONG & RESILIENT tree that God used to save His creation! It's all a matter of perspective. God's perspective to be more specific.
Look at the definition/description of a Cypress Tree in biblical terms with me!
"Cypress: In ancient Israel cypress represented healing, uprightness, evergreen, eternal life. They are long living trees that are able to endure harsh climates and poor soil." -Google
C'mon!!!!! This made me want to dance for joy when I saw this. Still does. I can weather any climate, crappy soil, unrelenting storm and have long life and eternal life.
HA, take that Satan! So much for your death wish! (Insert image of me: sticking my tongue out, like a little girl, whose Daddy just showed up to deal with the bully boy next door) Yup, I'm a Daddy's Girl!
The morning of my surgery, Shawn was suppose to drop me off at Stanford University Hospital 6am. He had to kiss me goodbye and leave me at the door. You know the COVID crap, separated me from the one person on this earth I wanted by my side for this. Yet, again, I knew the Lord was with me, so while I didn't like it, I was not afraid.
To my delight the 5 hour surgery was a success and I had no complications during recovery. I did so well they didn't require me to go to the ICU. I was also discharged 18 hours later. That was and is incredible! Shawn picked me up and brought me home to our AirBnB that we rented in Mountain View. Dr. Lim required that I not fly for 4-5 days after discharge.
Shawn was my sole caretaker for the entire time and did everything for me, even washed me. I wanted for nothing. He was tender, attentive, and never left my side except to get something for me. His care for me was the perfect picture of how a COVENANT LOVE should be expressed. I can never express deeply enough what that meant to me.
For context sake, I think its important for you to know that this was the same man I separated from in 2000 and divorced in 2002. After I became a Christian in 2004 the Lord was working mightily in my life and a book is in the works about that whole story. But for the sake of this story, in late 2005, the Lord told me to "return to my husband and withhold nothing" Terrified, I obeyed him in January 2006. That was 15 years ago and I don't regret any of it. God has and is leading us into becoming one. This would've never happened if I hadn't obeyed God in late 2005. God gave me both the confidence courage and tenacity to do so. He'll give you what you need for what he's asking of you too!
We travelled home on January 17, 2021.
The fight home while exhausting was uneventful, except the airline attendants
spoiled us with an exit row all to ourselves, Biscoff cookies and a sandwich to share on a "no meals" flight!
Oops, I forgot to tell you that I didn't have any Trigeminal or Glosso pain when I woke up. So I believe God uses the hands of medicine to heal too, right? Maybe this was just his way for this situation. I was determined to believe, rather than fear or doubt since so many people can wake up from the brain surgery still in pain.
I will be forever grateful to the friends and family who cared for our fur babies and our 14 year old while we were away. Todd and Natalia, I love you both. Sorry Natalia, I do love Todd a little more cause I've known him longer, he's my brother. LOL!
Marshall loves you both equally!
To the Friends of mine and friends I've never met who have been praying for me since all of this hit in June of 2020, Thank You So Much! On the days when I thought I couldn't endure one more attack, it was knowing you were praying for me, that made the difference. I truly believe this positive surgery outcome is a result of thousands of friends praying and the capable hands of skilled surgeon submitted to God that has given me this new future and a new hope. Paraphrase of Jeremiah 29:11
To MY Stacey who started and managed a GOFUNDME, for our travel expenses, THANK YOU. To those of you who donated, Thank You! You covered our lodging and car rental! For the dozens of you who made meals, Thank You! For those who sent cards, gifts and flowers, Thank You! We certainly felt loved.
So can I share a secret with you? During all of the recovery I loved showing people my incision site, it made me feel like a superhero, you know cause I had brain surgery. How many people can actually say that? Probably ALOT, but only 1 person I knew of! LOL So of course, I have to share it with you too! Don't hate me and if you do, then you must pray for me as the word says!
It's almost unbelievable what constant pain can do to a person’s personality, memory, energy, etc! My husband and close friends started sharing with me how much better I am now. My eyes are full of light again, and the “Old Tammi is Back” is the quickest way to capture their comments. I've learned from others how it was sometimes difficult to deal with me. For that I am truly sorry. I never meant to be impatient or ask you to repeat yourself for the thousandth time. I am so grateful for your love, understanding and grace. I needed alot of all of it! For those of you who just made it all about you and didn't show grace, I want you be blessed. God will correct you, and it's usually through someone treating you the way you treated me. BUt dont worry the healing will come for you too, if you submit to him, instead of your feelings! I know this from firsthand experience.
On the recovery front, I have learned that I am extremely weak. 9 months of constant pain weakened me severely and the post surgical limitations didn't help. But the medical term for what has happened to my body is deconditioned. So I’ll need long term PT to gain my strength back. I am slowly weaning off of the meds, and with that comes some challenges but nothing I haven’t been able to manage so far. I haven’t had ANY attacks since I woke up from surgery, but have had some “pain” as I have been weaning from the meds. Some call it rebound or healing pain. Those who say recovery pain is worse than the original condition have never had TN-GN-ON. Because recovery has been a walk in the park comparatively speaking. I'm so very grateful to be back to at work with my team and very much looking forward to the future together of providing safe, affordable modest housing for those most in need.
Now to the conclusion of this blog post.
2020 was both horrendous and amazing. I don’t know what my future holds, but I know who holds it. I pray I’ll be able to resume sharing my testimony publicly again soon and that my book is finished soon as well. For now I focus on recovery and restorationof strength.
I don’t know what you went through during 2020, but I know that God was with you too and he'll use every bit of it, the pain will be worth it, eventually.
As to the Question "Didn't God heal me in 2012?", I think the answer is: He has been healing me (in every way) since the day I cried out to him in 2004 and He WILL BE HEALING ME, (in every way) until the day He calls me home!" Until then I'll be like a tree firmly planted and rooted, walking in his love and purpose!
Prayers and Love,